Talking About Pain Event a Success

Talking About Pain Event a Success

We had a very good conversation about chronic pain, the opioid controversy, federal and state governments, how to effectively advocate and the National Pain Report on Thursday.

We participated in a webinar sponsored by the U.S. Pain Foundation in association with September as Pain Awareness Month. Our host was Emily Lemiska who is Communications Director for the foundation.

If you missed the webinar and would like to listen and/or watch, you can do so here.

If you do watch or listen and would like more information, feel free to let us know either in the comment section or via email. (editor@nationalpainreport.com)

Many of the questions seem to center around advocacy—from something as simple as joining a social media group on Facebook, following advocates and others on Twitter, to writing local media or local and state elected officials.

It was interesting, and a point that we made more than once is it’s not hard to lend your voice to efforts to improve chronic pain treatment.

In addition, we spent quite a bit of time talking about the opioid controversy, how it has harmed the patient and how the battle for good patient care is intensifying.

We spent some time analyzing why the news media’s coverage opioid coverage has seemed to have ignored the collateral damage that is being inflicted on chronic pain patient and noted a shining exception in Elizabeth Llorente of Fox News.

We named a number of people who are fighting on behalf of chronic pain patients including Terri Lewis, Ph.D., Dr. David Nagel, Richard “Red” Lawhern, Ph.D., Mary Cremer in Missouri, Cynthia Toussaint in California and the Don’t Punish Pain Rallies to name a few, in addition of course to the U.S. Pain Foundation efforts.

We pointed out that Cindy Steinberg of U.S. Pain was the only chronic pain patient on the HHS Pain Management Task Force. We also bemoaned the lack of progress being made on distributing the HHS report since Dr. Vanila Singh, who was (and is) a voice for compassionate chronic pain care left HHS.

The point is that chronic pain patients have a lot of people fighting for them—but the community always needs more.

Let us know your thoughts.

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Authored by: Ed Coghlan

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Talk, talk, talk. Task force. Committee. Pain definitions. Talk, talk, talk. Next day, same thing.

Holly

I was so upset….I signed up to watch and of all days for the internet to go out……Poof! No internet! Thank you for putting the link up to watch!

Since i had my meds cut because i switched doctors . I have been study all this and my conclusion is its the doctors .in everything i ‘ ve read its all up to them.i hate to say it but it is. And we do have rights they just dont want u to know it. And fear is what is holding us back and they are counting on that.do ur homework . I have found out that my state has no cap on chronic pain patients medications. Its the doctors . Look up state legislatures rules on chronic pain. The cdc is not a law and they have revised what they said earlier. U can have what u need if ur medical backs u up. Write ur state governor let them know whats going on. Write the medical board and tell them put anonymous and say why cause ur afraid of retaliation. Use a stamp and enevelope. Let them know who s on a power trip. Try to get other chronic pain people in in ur state thru social media to do the same . And keep writing. If u can afford it put an add in the newspaper or bring up the topic in the columnist section. Or better yet. wrote reporters beg for their help. We have got to make people aware of whats going on. If ur gonna bitch , bitch whete it counts. To the powers that be on publishing this blog . Let this be heard.if ur really on our side probe it publish this

On Fusion “The Heroin trail” very interesting but aggravating TV show that was released in 2015. Show some guy that’s a addict saying that he became an addict cuz he was cut off from his opiate pills that he receive for back pain. He became a heroin addict bc he had untreated pain . And also showed 30 people that were arrested for selling heroin . Okay do you think all 30 people wherever on a prescription opiate? I think not. Then it shows how many drugs are coming into the country and it was showing the people behind the illegal drugs. The reason why ccp are being lumped in with addicts is bc the addicts are saying the doctors got them hooked but I believe they’re just embarrassed that they will not take responsibility and just say no doctor got me hooked. probably find this show on the web. It even stated that 4 decades later after Nixon speech illegal drugs is still a huge problem, funny thing is they showed person smoking marijuana. Now marijuana’s being pushed.Ccp have always been regulated yet r grouped in with addicts. With the lower mg it hasnt stopped overdose deaths or the illegal drugs only thing it’s proven is the torture of people in chronic pain. It’s done an excellent job of that.

Kim Orion

Its is utterly ridiculous that all of us are getting thrown into the same pot with the ones who are using their pain meds for illegal reasons etc. I myself couldnt function without my meds. I can not take NSAIDS ( motrin etc) tylenol does nothing, I’ve tried PT, injections an NONE of it helps. To be honest my last PT ordeal I was kicked out, as it was making my pain level worse. My pain meds have never gotten rid of my pain completely but it does bring the level down enough so I can function physically. I also cant take cymbalta or any of them in that drug class as well. With out my meds, I am completely debilitated physically an cant hardly do anything, if I loose my meds because of this one pot crusade I will probably have to quit my job as I won’t have the ability to physically do it. Do I agree there is a problem with opioids, most definitely, but to take the meds away from those of us that need an use them responsibly is totally wrong an in humane. An why should we have to suffer because of other people’s choices. Not fair at all!!!
With all the modern technology out there today, I find it hard to believe that they cant track an punish the abusers of this whole ordeal an leave us non abusers out of the pot we’ve all been thrown in. I hope an pray for all of us that are being responsible, that your origination can fix the unfair process they are trying to do an implement. Thank you

Thomas Kidd

I guess that I am getting very tired of the talking going on about this. My wife needs a pain Doctor now. We have been married 47 years this past April and I am so worried about her. We don’t need more talk and discussion we need our opioid pain meds back to a level that we have some type of life. People continue to coddle the people who caused our suffering and continue to cause more. Many sick and dying people are at the end of their rope. They are creating new criminals daily and have no problem arresting them and putting them in jail, where more will die. This has to stop. I appreciate your efforts Ed but I am coming to the end of my rope to.

Maureen M.

HI Ed, I watched the talk and I just want to say that you both did an ‘awesome’ job touching on many subjects and issues.
I love your authentic ways, humor and handsome Irishman face! 🙂 And I got the pun about the nun! I too went to Catholic school! lol
Keep up the great work…we need you and the NPR/staff! Maureen M.

Thanks for this great talk. I recently attempted to gather data on chronic pain for the Sept Pain Awareness Proclamation (for Oregon). Was struck by the fact that my searches resulted in opioid info/articles. Speaks to how the opioid issue has gotten so wrongfully merged with pain patients. Very little research and data on the actual issue of pain. We have lots of work to do – thanks to you and US Pain for your guidance!

Debbie Nickels Heck, MD

Dr Singh will be speaking at the AAPS meeting in late Sept. I’m very interested to hear what she has to say, esp about what she believes will follow since the hearings and if any difference actually will occur. I’ll report back after the meeting.

Cindy

This week’s STAT newsletter column by Dawn Rae Downton called “Who is really behind a proposed new definition of pain?” is generating a LOT of comments.

The author believes that while the new proposed defn of pain seems more expansive as it doesnt’ require a diagnosis of a physical source of pain, that that’s a facade to harm CPP’s who need opioids. She believes that under the new defn, if it’s all in your head, then treatments like mind/body should be sufficient with no need for pills.

Her article details the basis for her reasoning, including a change in the Notes to the new defn as opposed to the Notes which accompany the current defn.

Comments about the new defn to IASP, which proposed the new defn, are due Sept 11. You can comment via Dawn’s article — click on a link in the text of her article.

Or you can comment directly on IASP’s website. IASP is the International Assn for the Study of Pain — but it seems to have been taken over by the likes of PROP.

The link to her STAT article is below:

https://www.statnews.com/2019/09/05/pain-new-definition-proposed/

And, Many thanks, as always, to Ed, Red, and all the rest who work on our behalf.

Fed Up

Bid deal. Lawmakers & trial lawyers started this mess. Talking amongst ourselves has dome nothing!

James McCay

Wish I could have participated, but I can’t participating on ANYONE’S Schedule but my body’s. It sounds like some good things were discussed, but things we’ve been discussing repeatedly on National Pain Report.
The day before the Webinar my 5-yr old laptop screen half broke off- yet works for now (the last thing I needed). I can’t afford a cheap new laptop! So I couldn’t have participated if I was able! When you have NO ONE helping you with Chronic Intractable Pain, it seems like your life is that of Murphy (Murphy’s Law).

Personally, I’ll can’t forget the fraud US Pain Foundation Founder committed & admitted just 3-months ago (and neither will the CDC, or any Agency). So is teaming up with them the right way to go? I doubt it… Even though it was only the Founder, the US Pain Foundation reputation went down with the ship (in too many people’s minds) which is sadly the case! I’m sorry, but I have to be honest. Plus many here likely don’t even know this.
I’ve been fighting fraud for free in the sports card & autograph hobbies for decades & many people NEVER FORGET!

I agree with others that terminology needs to be standardized in Chronic Pain & the medications we use to get some “Quality Of Life”. But who will the Gov’t let do it?

My new Home Care PA lost it (for 20-minutes ranting) on 8/29 (2nd time I saw her). She tells me “These other PA’s have these charts so screwed up that I have to fix after seeing 12-patients a day, that I’m not prescribing NARCOTICS to ANYONE again; including your Clonazepam!”. Her anger raising! “I’m NEVER prescribing that for you again- so you can get it from a psychiatrist!”.
The psych I can’t see w/NO MEDICAID in NY thanks to your company? So when I finally said “Clonazepam is NOT a narcotic, it’s a controlled substance! Plus if you cut me off cold (after 23-yrs) I can have deadly seizures.” She said “I DON’T CARE!”.

At least her big boss cared! He freaked when he heard she said “I don’t care!”. SCARY…

Thank you so much Ed, thank you so much to all of the precious souls for not giving up on all of us. Pain is like death, it comes like a thief in the middle of the night. Only with chronic pain, it lasts until you are gone. It robs you of the life you were meant to live. For those of us that are hell-bent on living with it with little or no help we are the strong ones, in my book we’ve already won. Perhaps one day we may just find that the world is ready to listen with understanding hearts. Ready to stand back and simply look into our eyes and see exactly what we’re dealing with. We’re not that hard to spot at all…

Gail Honadle

The first thing is to change the terms in current use back to the old terms. Narcotic Pain Meds not Opioids as it is confused with Illicit Opioids. Which we use to just call Illicit Drugs. And Better Explanation of the Words for Pain.

Intractable pain refers to a type of pain that can’t be controlled with standard medical care. Intractable essentially means difficult to treat or manage.
This type of pain isn’t curable, so the focus of treatment is to reduce your discomfort. The condition is also known as intractable pain disease, or IP. If you have intractable pain, it’s constant and severe enough that you may need to be bedridden or hospitalized for care.

Chronic pain is generally classified as pain that lasts at least three months and can’t be completely alleviated. If you have arthritis in your knees, for instance, physical therapy and over-the-counter pain relievers may reduce the chronic pain you feel in your knees. Simply resting your knees may ease the pain considerably.

Both the CDC, Doctors, Politicians, Media and even patients don’t know the difference. IP is Life Long at level 10 and causes more health conditions from heart attacks that kill or Suicide. Not all VA patients who commit suicide do so from PSTD. Many who were Forced Tapered found they had 2 choices Suicide or risky Illicit street drugs. It’s easy to hide a heart attack from IP pain as the disease you have progression effects your heart. So no one is counting them. Many have had Strokes, Heart Attacks, or committed Suicide. Many who were productive are now on DSSI adding billions to Medicare/Medicaid roles. And Insurance companies don’t pay for Stem Cell treatment, or many procedures are labeled Cosmetic and Medicare/Tricare Life or Medicaid doesn’t pay for them. Nor for the $2,000 P test a month only to be told you have to find a new Pain clinic, not because you failed a test, they can use any excuse. If you live in Tennessee you have 64 Pain clinics for the entire state. Over 300 closed.

Helene DiPonzio

It was wonderful to finally “meet” you Ed, via the webinar.
I am so frustrated everyday with the way chronic pain patients such as myself are being under treated because of the opiate controversy. Thank you very much for the tips on how to write to the media and our legislators. This was the takeaway for me. I am going to stop dragging my feet and not write with anger, but instead with purpose.
Thank you for being a champion for us.

Thanks Ed for all you do as a chronic pain advocate.

It amazes me the discussion always comes back to opioids.

While it was terrible many chronic patients had to taper or stop opioids, what made it worse was no access to effective alternative treatments.

A graduate of the Mayo Pain Rehabilitation Center 3-week outpatient program, I have learned not to rely solely on medicine, especially opioids, to manage pain.

The article below highlights my journey with pain as well as some of the tools I use.

https://www.statnews.com/2019/08/12/chronic-pain-journey-five-things-understand/

If this approach sounds interesting, please join my Facebook support group: Chronic Pain Champions – No Whining Allowed.

https://www.facebook.com/groups/painchampions

To learn about the Mayo program:

https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview?fbclid=IwAR1tSwyLnxgqi5xBPsu2Y60qBCkNphmSBztJHpXVOPVrhl5rQlHcf5Zig-8

davidkenberg kenberg

That’s great to here but we need help now.We have suffered enough time trying to wait with as much patience as possible and we still don’t know why were being punished because of drug attics. I have read and responded to everything that has come my way. Were so sick and all of this is has taken its toll on all of us .Physical feeds into mental. I Thank-you all who are fighting for us and your hard work. I have spent 18 years of research and asked for the help I need and I need it soon.I don’t know how much more pain I can deal with.I have full-body rsd from my brain,eye’s,nose,mouth,throat,chest,sternum,whole torso,right down to my toe’s.I am burning to death with very sever pain and other horrific sensations through out my entire body.I live in hell and fear for my life.I have tried everything down to having 2 spine stimulators One for upper body and one for lower body.They worked good for 2 years but like everything else its just another tool to use.They think because you have them your pain free.Your not and I have so much hard wear in my body I don’t think there’s anymore room.It’s been a real nightmare for me and my family.I would like to send some photo’s of how my face show’s Rsd,crps.I hate looking at myself .I don’t really look much anymore it’s to devastating for me.My clothes feel like there embedded in to my skin.I AM BURNING TO DEATH and I feel like giving up. I am a advocate, and a patient who has taught many Dr.s a long the way and also from my story. I have helped 5 patients that I’m aware of and probably more. Before all this crap I helped my G.p help others like me and other Dr.s as well that gave me all the credit and said that I’m a very well educated and a very determined women and they can’t imagine how I feel and as a patient about my horrifying disease and my story was very valuable. I will listen to the link u sent and comment again.