AMA Looking for Pain Patient Reaction and Other Things from the Reporter’s Notebook

AMA Looking for Pain Patient Reaction and Other Things from the Reporter’s Notebook

AMA is Looking for Input

Pain Patient advocate Amy Partridge reminded us all this week that the American Medical Association is looking for patient stories, particularly from those who have access to pain care or had their pain treatment reduced.

Amy reminded us on Twitter that you need to include:

  1. Your Name
  2. Your Diagnosis
  3. Medications
  4. Insurer
  5. City and State where you live

You can email your comments to opioidtaskforce@ama-assn.org

The AMA Opioid Task Force also has called on policymakers to take specific steps to remove barriers to evidence-based care for patients with pain and those with a substance use disorder.

By the way if you are Twitter, you should follow Amy @Amy_L_Partridge

Cannabis Support Continues to Grow

Since many chronic pain patients have turned to cannabis for relief, it’s interesting to note that the support for legalizing marijuana continues to grow.

A Pew poll found that 67% of Americans now support legalizing marijuana, including 55% of Republicans and 78% of Democrats. Among Millennials, 71% of Republicans and 78% of Democrats are on board.

33 states and the District of Columbia have legalized cannabis in some form—11 have it available for recreational use.

Here is a rundown from Governing Magazine.

CRPS Awareness Month Continues

November is CRPS Awareness Month and every year we try to pay special attention to promoting and educating our readers about this malady.

Our friends at Burning Nights are one of the organizations that does a great job educating people about this poorly understood condition.

There’s a great read by a young woman who recently was diagnosed that we recommend you read.

Here it is.

Young People Suffer Too

I spoke recently at a US Pain Advocacy Summit in Dallas and met a woman—a mother of two children who have EDS. She is writing a blog (or three) on her experience as a mom, a caregiver, a partner that we hope to publish later this month. Her story is very powerful.

That reminds me that children with pain is a topic that is under reported. Consider this an open invitation to submit ideas about how we can best tell the story of children in pain. Contact me via email edcoghlan@gmail.com.

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Authored by: Ed Coghlan

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Louise Rioux-Demore

I have Lupus and I’m in constant pain, I have been on morphine for many years to help me deal with my pain and now you want to take it away. Sad days for others like me.

Sam Peck

Denying pain relief is neglect. If narcotics make more pain receptors, making us more sensitive to pain, isn’t taking away medication from chronic pain patients neglectful? Since we are so sensitive to pain, you know that removing narcortics will cause extreme discomfort, but you do it anyway. That’s neglect and someone needs to be held accountable. To say that a Norco user is the cause of Fentanyl overdoses is beyond ludicrous. There’s another motive behind this war on chronic pain patients, other than stopping herion overdose. Not sure why you hate us, but it’s obvious we are a thorn in your side every time we seek relief. Your policy of weaning is criminal and someone WILL answer for our suffering. Shame on you.
Letting the government tell doctors how to practice thier trade will be the end of the family doctor. Who will want to go a quarter million dollars in debt to be a government Tobey? Shameful policy leads to neglectful practice. Will there even be doctors in twenty years? Fools….
I am suffering every day. I cry nearly every morning. You are literally driving me to the streets.i was a RN for nearly thirty years. I helped all I could and loved all my patients. This is how the government and AMA repay me. Shameful isn’t harsh enough. I wish you could just walk in my shoes for a month. You would be begging like a baby for narcortics. Only to be sneered down upon as a “drug seeker”.

David Alvarado

It,s pleasure,to be able to vent,The biggest problem chronic pain patient s deal with since this opioid crisis, which is a joke for the people that actually are affected.If your out there doing it for recreation and a mix pill party and you should loose your life or know someone that has.that is the real joker’s that are ruining for pain patient s that have worked all their life’s or suffered a serious illnesses like Cancer or real bad injuries from accident is the ones like myself that cannot even get proper care..The CDC needs to Target the real problem which is the street level criminals instead of hard working tax paying American s.

Sick of Suffering

If the AMA wants access to thousands of patient stories from those suffering in pain, they only need to refer to the dozens and dozens of pain or sites online.

I cannot imagine anyone so trusting as to provide such personal info as city, state, name of insurer to any 3rd party!

Intractable pain pts have had it up to the gills writing Legislators, Fed alphabets, responding to hundreds of Dockets, endless hours snail mailing, E mailing, attending rallies, being on the Hill, around the Hill, bringing blatant awareness on and on…and on.

We die hard intractable pain pt advocates are beyond exhausted and for the millionth time have been to the ” tell your story forefront” time and again. We have screamed to be heard, been ignored by levery level of those who could have done something at thr highest level… It’s only been 3.5 yrs since CDC came out with ” guidelines” supposedly for only GP’s…Almost nothing done since then.

AMA did not support PM Clinicians, took years to grasp the obvious that “tapering opiates” was having dire consequences and had their ” aha” moment only in recent time…

Paula

I too want to tell my story but don’t trust what’s happening here.. It just took me a week of suffering through withdrawals and pain once again waiting for my Dr. to ok my 5 mgs of Methadone 3 times a day with 3 to 4 T-3 for break-through pain RX. I feel as if I’m some kind of criminal when all I want is to have a decent quality of life! Watching my mother suffer through years of pain with very little help. When I was a young adult I worked very hard. I worked 32 years in a physically demanding job that I liked and enjoyed made my condition worse. I’ve dealt with pain most of my life starting as a child. To get to the point because fatigue is also something I fight now. I don’t understand what is happening to our so-called medical system. This last year has been hell. I’ve been questioned, embarrassed and humiliated trying to continue with Multicare GP. My Rheumatologist for 25 years has retired. He warned me “It” was coming and “It” won’t be good. It’s too hard to tell everything in a letter of how I got to this point in life. Let me just say this ……I’ve stopped and started on different opiates and many other meds. and various therapies for many years now but have never had anything help me to live a simple normal life. Opiates helped. I have already simplified my life further than it already was. How i have to live the remainder of my life concerns me and being told and treated as though I’m not important. I am suffering! I am afraid!

Debra Winterroth

My husband has neuropathy seconder to chemotherapy and graft vs host. If his pain is not well controlled the graft vs host flares, this kills 50% of pt with it. If we have to treat the graft vs host his chances of cancer returning skyrockets. He was going great for 10 yrs on high doses of opioids. Was a last resort because other medications failed to control pain. So here comes the “Opioid crisis “. We are told he has to try alternative again. Lyrica and gabapentin had terrible side effects; senility, anger/violent mood swings, loss of vision, uncoordinated, furniture walking, falling, memory loss… check the side effects and he had them, severe. Antidepressants make him suicidal. We saw 3 pain management Dr in the Tulsa Oklahoma area. Each did not know his medical history and clammed it doesn’t matter, acused him of being an addict and not having pain. They told us chemotherapy induced neropathy is Very temporary, wrong. After they tell us he has no pain , they each said they were implanting a spinal cord stimulator. When I question why sents they claim his only issue is addiction, I’m told they are the Drs and will make all the medical decisions. Also I point out oncology is agents the spinal cord stimulator because if the pain flares his graft vs host, he will not heal, ect… I’m told ” that’s not their concern ” . We were treated like we were stupid, these Dr attempted to intimidate us and tried to tell us we had to use them because we had a referral, that NO one else would see us.
We were there trying to find pain management closer to were we live. Oveuslly that didn’t work. We drive 7hr round trip each month to oncology to get appropriate treatment.
My concern is others cannot even get appropriate treatment anywhere. Pt are suffering the consequences of under and untreated pain. Developing health diseases, hypertension, cancers, depression, social isolation, suicidal, rapid diseases progression, ext…

In one report that came this year from the AMA, they stated that they are “urging” lawmakers and policymakers to end barriers to treatment and “encourage health insurance companies to get on board with “non opioid” alternatives to treatment. Read it for yourself on Google.
AMA report: Opioid epidemic shows signs of leveling off.
This tells me alot. From where I set I don’t see the opioid epidemic showing ANY signs of leveling off, at least at my doctor’s office anyway. They’re NOT getting my info! Not from me anyway. As stated below, there is simply NO TRUST left anymore. In the past I wrote that someone had told me I was going to hurt a lot, (duh).
That I needed to get on board with others helping. Something I’m not comfortable with doing, never have been and never will be. A few days later they more or less turned around and called me lazy! As bad as it hurt I got up and cleaned my entire home, then went out and weeded the garden. I was in tears for I hurt so badly I could hardly bare it and the next morning it was all I could do to bare weight on my feet but at least I HAD MY DIGNITY. You see, this they can not steal from me!

Giving out our horror stories for the umpteenth time I can understand, but our medications, insurers, cities and states? LOL! Excuse me but this is most laughable.
WHY ALL THE PERSONAL INFO??? How dare they? May as well send another letter to the “honorable Mr. Trump” as well as our congressman and women, this one they may just read!
The more I’ve thought about it; the more I smell a big fat rat not to mention a wolf in sheep’s clothing. What are they up to now? It would appear they’re trying to get rid of the rest of us. My trust is “beyond gone” as well as something I unfortunately have “for no one” except God above.

Holly

Oh dear, I just sent an email. But then I thought “oh well, they cant do much more to me than they have already done” I had stopped replying to all these things. It’s been 4 years now of wasted time with no change. I can’t be much more depressed over this BS than I already am.

Just wondering why the reporter Ed Coughlan want to advocate for AMA in their request for information? When he has work hard for intractable pain people.

AMA was the ones leading the task force for the fake opiate epidemic. Why give the enemy all your personal info, are they tracking what few people that do get opiates? Than what r they going to do ? Why don’t they get info of the people who commited sucide bc of AMA lead the way to this person death bc of untreated or under treated pain. No trust left. Beware !

Why would AMA care about patients pain conditions. One of my long time not a pain doc said physician like him & his colleague will soon be a out of business bc corporate business is taking over medicine they are being pushed out can’t compete. Trying not to sell out to corporates bc they tell u how to run biss, treat patient. My pcp said thats what happen to the University Hospital he works for and it’s all just total business now. Thanks Obama for ruining health care more. It open the flood gates to more mistreatment of ALL patients bc corps have more lawyers & individual have a complication r screwed. Docs can just move on to next unexpected person. Pray that u never need surgery theres no one to help if it fails & ur worse off. Too much info wanted by AMA why? Sounds like making ur self a target & insurance. Why not first name only? Or insurance no person name at all ?

David Hickle

To the ama it’s the person who your looking for 1 more time I want to know if you ever watched the tv show ncis the 2 shows 1 step forward and 2 steps back here is the thing why I’m leaving USA permanently I feel it’s no longer a safe place for me to live in i feel like it’s time I feel as if it’s the right thing to do and the right thing for me to do for my safety and sanity I’m going with what my gut heart and brain is telling me to do after what all America has done to me for 34years of my life it’s also the cause and effect the fact that you all caused me this and this is how it effected me and my life so yea me my family and friends hold the state of Ohio USA this nation government presidents politics democracy liberal republic laws the American system the entire health care system every doctor er specialists hospital urgent care mental health care system minute clinic responsible for the criminal actions and criminal mistreatment and hurt you all caused and committed against me for 34years of my life so I can no longer trust anyone in America anymore I’ll be moving to the United kingdom in real life in spring or summer next year so me and all of you are through I hope that the criminal actions and criminal mistreatment was worth 12pills a day of 8mg dilaudid and 12pills a day of 20mg diazepam and making and forcing me to permanently leave and flee the state of Ohio USA this nation America 6149203398 or 6142168151 4045 castel dr groveport Ohio 43125 USA David_hickle@gmail.com and please do not try to contact me what so ever in any way shape or form do not have any further communication or contact with me my entire family my friends I can’t even trust or put my faith or believe into you bad judgment calls and into a single word you say and tell me so me and all of you are through over done your time is up now

T. W.

I’m afraid to give my personal information, afraid I’ll be flagged and lose what little pain relief that I’m allowed.

Dave

As I made dinner I reflected on the possibility of giving my data to the current administration. I’ve been self reducing my pain medicine for years now. I think my PT, and DR. both realized my attachment to life was slipping badly. It’s like the bad OL days decades ago. He stopped all reductions of my pain medicine. I’m fortunate I know. I told him I was cutting it to protect me by protecting him.
I can’t see giving my data to such as the current atmosphere or humans in office. That’s me and for me safely is first. Trust isn’t present. No disrespect intended to APF.

I want to share my story

Anon

I would imagine theyll have a hard time getting that much info out of people who currently have scripts.

Deborah M Babcock

Hi there..My name is Deborah Babcock. I live in Eugene Oregon. I have the Orgon health plan Trillium..many years ago I had percocet 325 mg to combat my migraines after trying every migraine medication available..they took it away now I can’t even find a dr with my health insurance that will prescribe it to me. They lie to me. Treat me like an addict. Pop random UAs for no reason. I never been an addict of any kind btw..my other conditions are bursitis in my hips, bulging disks in my back, diabetic pains, restless legs,insomnia and my whole electrical system feels like it’s on fire when I try to rest so much pain and nothing helps but getting back up and working my body some more. It’s hard to rest or sleep ! This is undiagnosed..Never would i want to take medications if i didnt need it ! I went as far as to try FECO for pain and sleep. It sent me to the emergency room with very high blood pressure and I’m now afraid to try another product in this class of medications ! Thank you for reading and letting me put this out there ! Sincerely,Deborah…and i have nothing for pain but my strenghth..

Thomas Wayne Kidd

Thanks very much for your article. I will be writing about my pain. This torture must stop. I have tried multiple times to get a message to the President but it has not happened, or he is ignoring us who are in daily chronic pain. In my state our governor lost his place, which I believe was because of his indifference to what is going on. Many people are praying for Help. I have found that my Creator takes care of His own and brings judgment upon those who deliberately cause pain and suffering. This fake opioid crisis has been mostly brought about because of greed. The medical marijuana push has much to do with it as well. Profits are more important than the welfare of their fellow citizens in horrible daily pain. We are living in a most wicked and evil time. I will encourage all of my suffering people to seek God diligently. Thanks again.

Marguerite

As much as I want to participate my gut feeling says don’t. How do we know they won’t go after our doctors or our meds with that sensitive information? I don’t trust anyone or any governmental agency anymore because of how this whole thing went down! They know people are being tortured that should be enough.

If we give this most personal info., what all will be done with it?Who all will see it? In trying to help this horrific situation we’re all in, I don’t want to lose the very small amount of medication I am still allotted. Will our physicians be contacted? My Dr. is awesome, I don’t want to make him mad. Before I can do this, I need specific answers please.

What difference does it make?

.

Steven

Why are we the pain patients being eliminated like a deer on the roadside injured beyond hope? No, wait in most cases that would be preferable to the nonsense we are given. Like CBT, YOGA and the rest of it not even covered after 4 years. Even our families are taught to consinder us addicted goons who won’t help themselves so we live a turle life until we give up. Doctors unionize! STOP THIS INSANITY!

Gail Honadle

The side of the MMJ story being suppressed. I don’t want to suppress the facts, I want you to know them, and the risks involved. Do more of your own research.

Cannabinoid Hyperemesis Syndrome | Cedars-Sinai
https://www.cedars-sinai.org/health-library/diseases-and-conditions/c/cannabinoid-hyperemesis-syndrome.html

Cannabinoid hyperemesis syndrome (CHS)
https://www.medicalnewstoday.com/articles/326357.php#1

Cannabinoid Hyperemesis: A Case Series of 98 Patients
https://www.mayoclinicproceedings.org/article/S0025-6196(11)00026-7/fulltext

Cecil Marble

Well I done had 11surgery on my knee two bad implant s and got to have another on the 21of November for another one the DEA don’t even know what the hell is going on with you because they are not inside your body they need to have a major surgery and the doctor should not give them a dam thing then they would see what people are going through and if they won’t let people have the pain meds that is why you see a whole lot of people turning to street drugs and alcohol if the doctor would give the patients the right dose of the pain meds they would not be taking three and four pills at a time they want to give you two mg that won’t even touch the dam pain I think these DEA and other high officials need to start listening to the people that in chronic pain you they can go home and drink beer and wine and liquor they need to stop selling it all and see we’re they would be sick as hell I am tired of being in pain every day but now I have to go through another major surgery to save my leg I have had pick lines wound vacs hooked up to me not fun

MomGma

In re: AMA is Looking for Input

I would like to share my input but I’m very Leary about providing my name, city, state, diagnosis, medications and insurance info out of fear I will lose my medications. They can take that info and cost me my medical care. Is it a possibility that this could happen? My fears are they are on a fishing expedition to gather our info in order to cut those of us off who take narcotic pain medications. Thank You.

Steven

Jugheads that are pecil pushers looking like they care while we die. NWO WELCOMES YOU!