2020 – A Year for the Pain Community to Come Together

2020 – A Year for the Pain Community to Come Together

Wanted to share some personal thoughts today.

I’ve been speaking with pain patients (our readers) a little more often these days, mostly via phone. Didn’t plan it that way. It has sort of happened.

Let me share a couple of conversations that sum the two basic themes I’ve been hearing.

First, there’s a patient—let’s call her Susan—who has a story that we hear way too often. She’s been a chronic pain patient for over a decade and has other issues—in her case diabetes and cardiac issues.

Access to her pain medication is an issue ongoing. She fired her pain physician for indifference. Her primary care physician, she says, is sympathetic but gun shy and when she gets a prescription, it’s often at less the dosage than she has historically been prescribed.

For Susan it’s all about getting her medication—she’s disabled—and her desperation is palpable. She is appealing—she admits often just arguing—with her hospital about her treatment or lack of it. She doesn’t have many alternatives, she’s trying to generate some media coverage to shed some light on pain patients being the collateral damage in the “opioid crackdown”, but has a hard time getting their attention.

“What am I going to do?” she asked.

A second patient—let’s call him Bill—is concerned that the opioid issue is overwhelming the bigger issue for him and others I’ve spoken to—that for many pain patients access to other therapies that insurance covers—from physical therapy to mental health to virtual reality—need to be more actively promoted.

“The public discussion about the treatment of chronic pain has to broaden beyond just opioid prescribing,” he said. “I am very sympathetic to those who are being denied their medicine, but the overall treatment of chronic pain simply has to get better.”

If we have learned one thing in the years that we’ve been here at the National Pain Report is that the treatment of pain is not a one size fits all treatment.

It’s more of an “all of the above” approach.

Do patients need more access to opioid pain medication?

Yes.

Should other therapies beyond opioid medication be promoted and prescribed?

Yes.

Until the pain community (patients, providers, insurers) realizes that these aren’t competing thoughts—but rather go together—I’m afraid we are going to lose more of our people and condemn even more to long-term suffering.

It’s a time for the pain community to speak with one voice.

How do we do that?

That’s the challenge.

Would appreciate your thoughts.

Will share the interesting ones in future columns.

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Authored by: Ed Coghlan

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I to have chronic pain.. I had it for 13 years… Now all of the sudden my primary care doctor disappeared and I can’t find anyone to help me.. I feel trapped. Never wanting to go nowhere because I’m always in pain… HELP!!!

Nancy Wheeler

Attend a Don’t Punish Pain Rally in your state. They are being held in March 2020.
https://dontpunishpainrally.com/rallies-chart/
Educate yourself.
https://dontpunishpainrally.com/cpp-news/

Write and call your legislators.
Call the media to tell your story. Don’t give up.
https://dontpunishpainrally.com/files-section/letters/

David W Cole

We need to get more people in the media to tell our story’s.
Especially the stories of family members who have committed suicide due to pain or incurred other illnesses or problems.
We could all pitch in some money and buy some TV ads. However I noticed pain patients are big givers… I keep buying lottery tickets, I’d love to put 50 million into lawyers, tv ads, Etc…

Julia Woodruff

THE MORE YOU SPEAK UP THE WORSE YOU GET TREATED. For almost 2 months now I have tried everything I can think of trying to get the Dr to talk with me concerning my medication refill. Due to my standing up for myself after his nurse called me a liar and hung up on me I have been left to suffer. Even the pharmacist who can clear up the matter and prove the nurse made a mistake and I certainly did not lie has been ignored. I did everything that it says to do including contacting the human resources office. You cant be treated badly or punished by contacting them my ass. I sent a message saying the nurse has made me feel worthless and unworthy of being treated with any kind of respect,kindness or compassion and that I’m struggling and I need help. I needed to be heard and the power that shes abusing to be taken away from this nurse. A week later I get woke up by police banging on my door because she said I’m going to kill myself? No one called me. No one called any of the 3 people on my HIPPA paperwork and a week later they’re suddenly worried and this is supposed to make me look bad? NO MATTER HOW GOOD A PATIENT YOU ARE THERES NO ONE WILLING TO FIGHT FOR YOU AND NOW THANKS TO THE VERY GOVERNMENT WHO IS SUPPOSED TO PROTECT ME, A DISABLED AMERICAN, IM LABELED AS SOME ADDICT INSTEAD OF SOMEONE WHO HAS FOUGHT LIKE HELL TO EVEN BE ALIVE? OR A WOMAN WHOS SPINE IS SO BAD NOT ONE DUSC IS INTACT, HAS PINCHED NERVES AND NEEDS A KNEE REPLACED YET IS THE BEST PERSON SHE CAN BE AND IS KIND AND CARING TO EVERYONE. NOW IM JUST A MONSTER? THEY DONT WANT ADDICTS TO OVERDOSE YET THEYRE STILL OUT GETTING HIGH ON OTHER STUFF WHILE PEOPLE WHOS BODIES ARE TRULY BROKEN DONT GET TO HAVE A LIFE OR ANY RESPECT FOR THAT MATTER. IT IS ALWAYS HEARTBREAKING TO HEAR OF ANYONE OVER DOSING BUT AT LEAST THEY ARENT TAKING AN ENTIRE FAMILIES WITH THEM LIKE DRUNK DRIVERS DO EVERY SINGLE DAY. WHERES THE CRISIS OR CONCERN FOR THAT? JUST LIKE A GUN LAW..ONLY LAW ABIDING CITIZENS WILL BE LEFT DEFENSELESS.

Lady Mary Ellen

We are
Voters
Voters with chronic pain
There is a war against us—we all know that!
So let’s change the words to reflect how we are isolated and driven to despair.

The war against VOTERS with pain!

Kristina Ruth Schultheis

This is exactly how I feel. We need all modalities to be accessible and affordable. Covered by insurance and not one or the other. No more stigma tainting our treatment options. Doctors not choosing treatment or refusing treatment based on fear of losing their licenses or because they get paid more for one. Stop using addiction as a catch all to not help people. Treat each patient as an individual. Treat the whole patient. See who they are and how their life circumstances effect their treatment. We are people not numbers. We all have different diagnoses ,complications, and choices to make about our health but we all have the same basic human rights. We deserve to be treated with decency and respect. Just because our health tends to put us in financial stress does not make us any less deserving of these things. Together regardless of our personal choices for treatment we can show the world what we need. We are not going away. Changes must happen. Changes will happen because we will not give.

LJCoach

2of2

‘Postsurgical Prescriptions For Opiod Naive Patients and Association with OD and Misuse’
British Medical Journal-Jan 17, 2018
(In a pool of 1,015,116 opiod naive commercially insured patients undergoing surgery
from 2006-2013: “…568,612 (56%) patients received post-operative opiods, and a code
for abuse was identified for 5,906 patients (0.6%)…”)

‘Opiod Abuse in Chronic Pain – Misconceptions and Mitigation Strategies
Nora Volkow, MD (NIDA Director) and AT Mclellan PhD-New Engl J Med-March 31, 2016
(PAGE 4: addiction in only a small % of prescription drug patients, even those w/ a hereditary
predisposition.)
Screaming the usual ‘Genocide’ & staying off-point repeating gloom and doom why even try narratives will change nothing.

LJCoach

1of2

30+ yrs all limb RSD/CRPS; 27 yrs on opiods: 17 on the usual suspects, took a 1 yr break to retry the off-label stuff again, and finally back to tapendatol for the past decade. Constantly respond via email/twitter to out of context news stories or television shows misrepresenting responsible legitimate prescription opiod use. Email politicians too, my own as well as others who may impact State & Federal law. I don’t get overly emotional or I know there’s no chance of being taken seriously. There are too many studies that can be brought to their attention:

‘Changing dynamics of the drug overdose epidemic in the United States from 1979 through
2016’ Science Mag-Sept 21, 2018
(the so-called ‘Opiod Epidemic’ is just a newer phase in a 40 year trend of escalating drug usage.)

‘Effect of Opioid vs Nonopioid Medications on Pain-Related Function in Patients With
Chronic Back Pain or Hip or Knee Osteoarthritis Pain – The SPACE Randomized Clinical
Trial’ EE Krebs, et al-JAMA-March 6, ‎2018
(of 108 patients who completed the study, all PRE-SCREENED and subsequently monitored
by prescription record checks & frequent urine testing, all were found free of substance use
disorder.

Jen

I just wrote a couple of posts here about all this, though forgot to mention that while at my primary care visit (this week) I told the doctor what the Ibuprofen label claims now…that taking NSAIDS reduces the effect on taking aspirin to prevent heart attacks and strokes, he said doctors have known that for a long time.
I also got a copy of my cardiologists report from last months visit that I had them send to my primary care doctor. The report has multiple denials of symptoms that the doctor NEVER asked me. I had been given Praluent for cholesterol and had many sides effects (I found others on the internet that had the exact same side effects) but the only symptom the cardiologist said he believed was from the drug, said it was an allergic reaction, put the drug under “Allergies” but did not put that symptom in my record. Tells me he doesnt think I should be taking NSAIDS as it raises BP and damages livers, that the key to the bypass surgeries long term success is maintaining low cholesterol and since taking the drug I have had too much knee, hip, leg pain to walk without a cane. I was walking on my toes in the worst leg and he commented he didnt like the way that looked and yet it is recorded in report “normal gate”. Meanwhile Primary doctor hasnt heard of these side effects so takes xrays that show no sign of arthritis in knees, cannot increase pain med., knows Im taking Ibuprofen and then cannot eat for days from stomach issues and hip replacement is the answer when I am telling him I want to wait until the drug is out of my system and the opiate mess is fixed to guarantee I will be able to do the PT after surgery because I was hugely under medicated after bypass surgery and the visiting nurse called the surgeon to no avail.
I am seriously starting to believe now that they have control of the doctors through fear, that they may also be giving them incentives to continue no matter what guidelines change.

Jill

I just want to voice my opinion of Susan for what its worth. You can be strong and voice your valid concerns without being argumentative and confrontational. The assumption that a doctor is “indifferent” would not seem a good reason, to fire someone who is trying to help. We all need to stand up for ourselves. I left a pain mgt. doctor who’s PA verbally abused me. And I’m now grateful to my new doctor for his understanding the pain.And I don’t take out my anger at this horrid situation by bitching to him. It is in my own best interest to be nice. We’re in this for the long haul people. Its been years.

Its called depopulation to get rid of the elderly, & sick. Seniors are the ones who have handed down the greatness of America. With God taken away from everywhere he was America is slowly dying.

Make America Great with God back in the Whitehouse. Repent of National Sin, ask for forgiviness on this nation. Maybe with Americans on their knees God just might make us Great Again. Go out & Thank a Senior for making America Great with God.
Thank a Veteran for keeping America Safe from our Government started WARS.
Greed will kill off the Value of America that once Was Great!

Jen

To Jeff Sampson, one person wrote that they had to get their spouse into hospice to get adequate pain management.
To everyone else; I just got back from doctors appt., a doctor who does not believe we pain patients should be paying the price for addiction of people without medical conditions. I am 20 mg below guidelines and have maintained that dose for 8 years and today after taking new xrays and showing bone on bone hip dysplasia and being told it is only a matter of time before I will not be able to walk without a hip replacement…still he cannot increase dose (I cannot do surgery at this time) to buy me time as this small practice with 2 doctors are changing their system to be followed by government and he feels he will put all patients at risk with ANY increases. He said increases will draw attention and he would then be regularly watched and said they will then force him to start reducing everyones dosages. The government is NOT slowing down and they are NOT hearing any of us. We MUST put the attention on our plight and call it what it is....GENOCIDE it is genocide and the ONLY term that will get the attention of the public. If you patients and advocates are ready to fight I will help and continue to offer ideas. If you are not willing to to file complaints or use the term genocide Im done. I have watched many period pieces and nothing changes by those who are not willing to be noticed and “demand” to be heard. Advocates have done nothing but plea to deaf ears and that is why nothing is changing. It`s like falling in a well and then whispering, hoping the person who pushed us in will hear a cry for help. Our bodies may be weak but “we the people”…have not lost our voice or our capacity to find ways to be heard.
All government workers need to be forced to be drug tested and tested by labs not in their control…that should be another demand “by the people”.

Michael Kawietzke

Most people who are disabled and in pain can`t even get into a bathtub and personally I tried CBD and did nothing for me.

Have you guys tried hot baths and CBD? That might work for you guys, I know someone who use this for pain management for Fibromyalgia

Jen

Read Dr. Lynn Websters latest blog report, Jan. 18th, I think it was Dr. Kline`s article that was excellent, if people gave a moments thought they would get the lie and see that parents, grand & great parents would all be addicts if there was truth in addiction after a surgery …is just one “fact”.
9.Ask if we can all use the information to print out flyers to stick on windshield wipers.
10. Accept the fact we have to fight OUR own battle and no war was ever won waiting for someone else to fight it for them.
11. Someone with computer knowledge needs to come up with a way to organize these things bedridden patients can do and understand those who still receive opiate therapy will not likely give their personnel info but everyone with out has no reason not to as we must willingly to share our info to work together.
12. A listing of addresses to make it easy for patients to send or call to agencies and media.

Jen

I will repeat this one last time because this time you asked. True most patients are home bound….but we have the internet and phones…and the person who spoke of egos was right…if your interest is your name being seen…your not in much pain.
1. A message or “short” letter to the abc agencies, government officials and ALL media outlets, “retract the LIES and stop this GENOCIDE. We need to learn how to “fight”, how to be noticed and understand we have been pleading with people who DO NOT CARE if you live or die….believe it.
2. Contact support groups where people gather to gain numbers, fibromyalgia, cancer, etc. support groups and get people involved from every state and every town.
3. Write, e-mail & call the agencies and media of set dates that we are protesting for the TRUTH to be told by spreading dates nation wide to shut off all news media via social media to affect their ratings.
4. File medical complaints against all medical facilities and physicians who refuse to treat with opiate therapy.
5. For those who have been weaned off, declare it on vitals and health grades. Also request your medical records so that you have proof if doctors retaliate because of it.
6. READ: NSAID labels warnings now for people with stomach issues, 60 yrs. + and who take aspirin for high blood pressure. We are NOT supposed to be living on it unless the governments latest money scheme is focused on livers, heart attacks and strokes……..again GENOCIDE…show your doctors the newest labels on Ibuprofen.
7. Set up a web page offering information, “the truth” about the opiate LIE”, the public has been brainwashed and they do not go to these sites they ONLY know what they see on t.v. Do what the Humane Society does and send out facts by mail to “the people” and offer sites to go to for them to read. 10 facts at a time…people not in pain do not have an attention span for any more then that.
8. Ask companies to donate bumper stickers, make utube videos that grab attention.

Brenda

Virginia’s comment is crucial! Until we start filing written (documented) complaints and legal motions against the healthcare systems, pharmacies, health departments, state govt’s, FDA, CDC, etc…we will continue to get nowhere with people who don’t have pain and therefore will never understand or agree with us. And we need to do this en masse!
Case in point: the 2 Maine residents (businessmen) who sued the state over the 90 MME limit as it would cause them to lose their businesses and families, etc. Google it.

Ann Sable

The only ‘egos’ I have encountered on this site is directly from the governmental alphabet. Which in turn, will cause backlash and duly deserved outright. Yes it is true that tv series are ruining the truth with any and all procedures that pain meds are needed. People, of all walks of life, are crying out in horrendous pain, mentally, emotionally and physically broken down and even death by undue process…also those we have lost in their own battles, sadly. True with the statement of those that are able-bodied and can afford to get out of the house to be our voice and body when those of us cannot. It is very much needed. True that this can and will go on and on, dragging out with the very word, “Talk”. True that they have resorted to feeding us nothing but poison now…Lyrica, Gabapentin, Cymbalta, Toradol, Ibuprofen…the list goes on and on. And yes, they are GI destructive medications, especially to those with lacking much bowels, kidney problems, heart, lungs, liver -you name it. So, what are we to do with all of this overload of farce? Excellent question!…but no real answer to it. Not in ‘their’ book, that is. In ours, there is an answer, but it’s out of reach. Will we see it in our lifetime? That last question, I’m leary to answer, for I am afraid the answer will be NO.
To all CPPS of all sorts, empathy, compassion and blessings.

Kathleen Ganley

Lisa and Hayden: Listen to this : https://wp.me/p2x8tw-8xs by Dr.Thomas Kline. It might give you some answers to the questions you ask.

Jeff

I personally don’t know of there is any one answer. I believe we need to take an all in approach and form a group with excellent solid leadership and present doctors with our stories shortened yet in a powerful well written undeniable format. However we must make sure every hospital as well as doctors groups and medicine manufacturers long with the DEA, President of the USA, CDC and every other board or what have you that is INVOLVED every day making the decisions and choices that affect us “the patients” after all its us that’s paying the ultimate price just yesterday when I seen my doctor he brought up once again I am on a high dose of medication which isn’t entirely true my pain medications were reduced three years ago and have never been raised.
Now I am terminally ill ther isn’t any doubt I will die soon enough yet they refuse to increase my medications to levels that will provide me much better comfort. I am also in a catch 22 even my doctors just said yesterday my medical conditions are very painful yet refuse to do anything to change that their excuse in case in were to get in an accident or something wtf I am dying who cares help me.
So I don’t know what more can be done except continue to fight just be more organized and forceful with the entire medical communities. I wish I had answers most days I can barely keep my sanity or I would get deeper in the fight with you, you have my word though if God will let me from heaven I will be fighting for you and along your sides.
With all my love!
Jeff Sampson

Paul Bartolini

I still want to file a class action lawsuit in the name of all chronic pain patients to stop these doctors and the government from stopping our treatments, treatments that work for many of us. While AG all across the country are suing the pharmaceutical companies over the misuse by some of pain meds, that doesn’t include those of us to take our meds to have a semi life. We are the collateral damage to this misguided war on drugs. For those people that abuse drugs because for them their lives are unmanageable we offer treatment and help, but if your in documented chronic pain you are treated like a addict even though you don’t abuse the drugs, you take them to deal with the very real physical pain that stops us from living a good life. Lets sue these bastards. Please if your a lawyer contact me. I have literally thousands of patients that are willing to it there names on this lawsuit. We need to stop this madness. NOW.

Paul Bartolini

I’m sorry to say this, but I have given up with the medical community taking care of me. My doctor, who I have travel 16 hours in a round trip drive to see as I can’t get any doctors here in Oregon to treat me, is retiring. All he said to me was I’d better find another doctor to treat me. No referral, no recommendation, just go find another doctor that will prescribe the same medication he has had me on for over 11 years to help me deal with my chronic pain. This is an abomination as he knows the reason I drive from Oregon to California to see him is because I CAN”T get a doctor in this state to treat me. Once again I’m thrown to the mercy of doctors that aren’t out there willing to take on a 65 year old patient who was forced into disability because of his chronic pain, a pain that was caused by a botched surgery done by a doctor!!! I don’t know what to do. I’m left without any options and am seriously considering ending my life right now. I’ve had my medication reduced by 40% and been forced to deal with my pain at its worse because the medication rarely last the month that I’m allotted on my present prescription. What can I do? Does anyone know any doctors in Oregon still willing to give a pain patient the medication it needs to survive, to have a somewhat normal active life? My pain is clearly documented, I’ve tried every other medication out there to help but none works as well as the Oxycodone does. I’m not some junkie! The surgery that caused this has cost me my job, my marriage, some say my personality and yet I’m left to my own devices by a callous medical community who because of false evidence as put out by the CDC(in conjunction with the DEA)has taken away the one thing that works for me, pain medication. If anyone out there has a solution to what I’m going through, I’m sure I’m not alone, please get back to me. I am literally at the end of my rope.

Kathleen Kaiser

I think we chronic pain patients need to realize that our pain will not be stopped by only one type of treatment. I think we tend to think of opiates as a lone treatment. But if we augment our opiates with injection, PT, acupuncture and other alternative treatments our pain control will be much improved.

Sharon

Since I have no knees and no discs in my back. Arthritis has grown between my spinal cord, also calcium deposits in my arms. Double bypass, kidney disease. I wake up in pain in the middle of the night. All doctors say get used to the pain. My idea is. Develop a law that we can go to a hospital legally so we can all just be put to sleep. Any thing else is just torture.

Thomas Wayne Kidd

History has shown that getting people to come together is a most hard thing to do. To see this just look at Church history. The one thing which causes this is actually love for one another. So I don’t expect much to come of this.

Thomas Wayne Kidd

How about an electronic petition wilth the names of as many chronic pain patients as possible,
and get it to the Congress and the President. Asking that the unnecessary suffering be stopped? If this took place in every state it might get their attention.

Dear Mr.Coghlan thank you so very much to carry the torch. But every treatment possible has been available so how do u broaden from all the modalities other than getting a manufacturer to create different pain medication? Yes I kn not all of these are available to everyone. even if they were & paid for by insurances the results would be the same CCP kn what wrks opiates. collectively all the treatments / modalities have had little effect on those that tried them. Unfortunately opiates stand to be the number one modality that works for 95% of chronic pain people other than those that are allergic to it. The only reason chronic pain people keep saying opiates is bc it wrks & it is cheaper than all the other treatments & like I said all the other treatments wrk quite less than opiates or not at all. Some have even cause further damage like spinal stimulators or multiple surgeries. There is nothing left. There is no futuristic modality & that’s why several people chose suicide. The further we move away from opiate use there will be more deaths. Yes The continue theme is let us have our opiates medication. The other theme is that yes we are moving away from the use of opiates but a lot of more people are homebound & suffering or suicidal. My biggest question is why do we have to move away from opiates & use other modalities if they’re not working? When illegal overdoses still continue? There has to be another reason why ccp are suffering & no one’s going to let the cat out of the bag. It can’t be saving one person over killing another. Bc that’s what is happening except in an indirect way the killing is happening. It’s just written off as depression not as suffering from chronic pain.

davidkenberg kenberg

I know how it all goes.I think it sick what there doing to us who suffer. I have a big story as well about my disease Iv been fighting hard to live with for the past 18 years and can’t get the help I need as well.Dr.’s freak out and are scared to treat us.I really got to the point of not wanting to live this way anymore.I’m depressed and scared.We who are sick have nothing if we can’t move or get pain meds to be stable with our severe pain.I think this is going to get worse for us.They should be held responsible if we die because of them.They tell Dr.’s to do no harm what are they doing to us? Harming innocent people who are suffering from what there doing.Our rights are being violated and they should be sued.What gives them the right to hurt so many lives and our family as well.We should find lawyers that will take our cases and help .Every time I see something about pain med’s put in a story about addiction now its always the problem for everything.This has to stop unless there trying to kill us off. That’s how I feel.Stop accusing us of something were not doing.There will always be addictions and its not because of pain med’s for those who used them right.Go to facebook and look me up you will see what my disease does to my face and body.Kimberly kenberg. Thanks for trying to help us.

Cindy Paslay

I know the frustration, I too am a chronic pain patient. I currently have a great pain management team, but God help you if you have to go to a hospital for any reason. They look at you as if you are crazy or a street drug user.

Monica N

I also believe it will takes years for anything to change. And I believe if you are a wealthy you will get an opioid prescribed and if you “know” the right people you will get an opioid prescribed. And I mean the amount needed for pain relief !
What we, the people suffering and dying from the “The Opioid Guidelines”, need is a wealthy famous figure to bring to light the suffering that we are experiencing. The politicians won’t do it, they are paid off by the drug companies and some even are benefitting from all the new “Pain Clinics” that are now making millions !!!
HOW do we get the help we need ???
Is there any way we can all ban together and bombard a celebrity with letters to help us ? Is there a class action lawsuit started anywhere ???

Cindy too

I’m amazed that “Susan” fired her pain doc for indifference. Since I moved to FL, I have found that most docs are indifferent to one degree or another. Of my many many docs, my Gyn is the only one who truly is kind and full of empathy and calls back 100% of the time, and even makes sure it’s on the same day. Most offices here dont’ call back at all. Attitudes here are so different than when I lived in Mass.
I see my pain doc for pelvic pain syndrome, but last year called due to a migraine that I couldn’t get rid of. Never got a call back. When I saw him the next time, I told him what happened and he just shrugged his shoulders. Incredible. But, he gives me my Rxs and so I’d never ever fire him, and I live in fear that he’ll stop practicing for some reason; whether due to the DEA or he gets sick or hurt.
It’s too hard to find docs who will prescribe, and while I believe I’d do better if I had more pills, no one has ever given me more in my 11 years of suffering, and he’s my 3rd or 4th PM.
So, if your doc gives you the meds you need, when so many others wont’, then, how do you fire them? I would not have. Esp since her PCP apparently prescribes her a lower dose.

I’m also impressed that she’s gone public, given that she does get some relief. I have contacted my federal legislators and federal agencies, but have been afraid to contact any state legislators or agencies. I’m afraid for a number of reasons. Dont’ want to draw attention to myself; to have the state medical bd examine my case or my doc and decide there are too many pills. Don’t want local people to know what’s in my home. If I was cut off, that would be different. Nothing to lose leads to more desperate measures. But Susan isn’t and so her actions again amaze me.

Chris

I bet all the people head of cdc and dea and fda get there pain meds and they opioids .Do as I say do not as I do.

Deborah L Molitor

I think we need to set up more Community Meetings where they can be either filmed and or have the media there to hear actual People telling our stories and fro most of us we are ready to end our life’s cuz this is just not worth the pain and suffering and spending all day in a bed trapped in PAIN.. Just one thought out of a million ways we could shine some light.

Margaret Lutman

I don’t know if it would make a difference, but most medical tv dramas have had recent episodes about opioids with the portrayal of addiction caused by meds prescribed after an orthopedic injury. I wish they would present a different side as well. This holds true for other tv shows such as The Doctors. I plan to send emails to all producers with my request.

Gail Honadle

Not one of these Snake Oil ideas take into account a person’s age or mobility. Keep shoveling Lyrica and Gabapentin on us, they are more ADDICTIVE THAN HEROIN. Plus the FDA has issued a breating issue with them. Not for lung damaged or Asthma patients. Epi’s for child birth has been around quite awhile they are dangerous add Torodol to it you have a disaster in the making. Women have given birth with out it for thousands of years, is it painful, yes but it only last a short time. If you need a C section that Torodol is a blood thinner and a GI destruction drug.

Tony hardy

Medical professionals don’t care the government doesn’t care unless it’s them or thier family then pain medication is okay, but if is normal disabled people then they get thier medication taken away or drastically reduced to the point of people going thru withdrawal and it’s not right. We get punished for what others do, so do they punish people that drink because some other person got in an accident for drinking and driving? NO. It’s as almost like the government and these people want chronic pain patients to commit suicide, because thats what it’s coming down to. And when someone does because that can’t take it anymore they will say ‘ look he committed suicide because he was on pain medication” no you dummy he committed suicide because you took the medication that was helping him away!!! Do you just take away people’s diabetes medication? So why do it to chronic pain patients?

Hayden

That is an excellent question. How does the pain management community, inclusive of our physicians, insurers, and pharmacy speak with a unified voice. I can sympathize and understand the “pain” of losing a family member, friend to substance……abuse…..overdose. I have experienced both the loss of a sibling from overdose, substance abuse, inclusive of alcohol not simply prescribed medication. I have also lost my Father due to the inability to cope with pain, 24/7, from neuropathic pain. He took his own life. What I can NOT understand is the torture of patients with known pain generating issues, with years and decades of documentation of use of opiate medication as the LAST resort to manage pain being condemned to suffer for the rest of “life” after ALL other therapy has failed to manage the pain with even multiple, non opiate therapies. A combination of PT, ability to “allow” me to move with a sufficient dosage of opiate medication WAS the answer for me for…..23 years. Now, with the “guideline”, it takes tremendous effort to simply accomplish the daily, routine activities I used to could do with a tailored to my condition of medication, moderate activity, and the mindset that I did not have to literally dread trying to move. The absolute limitation of dosage, for one and all, morphine “equivalent” of 90 milligrams daily make no sense at all. Documentation of positive benefit of efficient medication means nothing. It is nearly impossible to “explain”, make those without disabling continuous pain understand what “life” is like day to day.

Theresa L. Negrete

I keep reading and just shake my head. This sort of incident has happened before. I have no hope that any of the 3 ideas you listed will come to fruition in my life time. Historically, there will be talk, talk, talk and more talk, getting nowhere for a long time. The sad part is, MANY of us are in the position to know we are on our own!!!!!!! Some have turned to illicit drugs, some have HAD NO CHOICE, but to have invasive therapies that have harmed them even more and many have killed the PAIN by killing themselves and the list goes on. Every time I read another pain Patients story of abandonment by Doctors, being preyed upon by “Peddlers of ALL the NEW products that “CLAIM” to cure pain, the Government that we thought cared, however, now KNOW they don’t, it KILLS me a little more inside. This is not only physical pain, it affects my thinking, emotions and spirituality also. I’ve heard descriptions of Hell and this is literally HELL on Earth, PAINFULLY!!! There won’t be to many more thoughts from me. I need relief and since I fit into to many new categories of “Most Likely to Become Addicted”, I also have NO HOPE that I will EVER get Opioid relief again, unless they are illicit, just SUCKS! I’M ON MY OWN and everything about life screams, “RELIEF”!

Lisa

I think the fact that so many of us are completely home bound and disabled due to our un treated pain, we need to collectively come together the one way we can…… ON LINE. Most of us cant physically leave our homes to rally or financially leave our homes to rally so the best logical solution is an ON LINE rally. I believe all if not most of us can attend if it’s ON LINE. There is a HUGE segment of the population suffering, we DO need to come together and get our voices heard.
Also, I have said this all along, I believe strongly that if a person has documented painful conditions, they should be viewed in a different category by medical personnel. We are NOT drug seeking, we are disabled by the pain that this condition causes, therefore our ‘addiction potential” should be viewed differently than say a person who just randomly breaks a leg and will have temporary pain. Long term under treated pain is detrimental to a chronic pain patient’s health!! This needs to be taken more seriously by the medical and government community. We should be viewed and treated in a different category than a non- chronic pain patient.
The government is calling the shots for our medical care, how is this logical?? Does the DEA, CDC, FDA have ANY medical training backgrounds?? How are they qualified to determine the best medical treatment for such complex issues such as chronic pain? This war on illegal fentanyl /heroin overdoses needs to be completely separate from prescription drugs overdoses which is significantly higher and the stats show this. The war on pain patients needs to come to an end and compassion needs to return to the forefront.

Marguerite

To be honest I have tried for 5 years ro bring the pain community together but for some reason I don’t resonate well with the community. There’s a lot of ego involved and that needs to end. There’s no room for ego here. We need to come together as 1 people 1 voice 1 community. We need to put aside our differences and look at the commonality. We also need to include the kratom and marijuana communities as well because so many people in these communities are in pain and have an excellent history of lobbying and advocacy. We need those people who can still get out of their homes and fight. Once we can put our differences aside can we move ahead and take back our healthcare and our lives.

Steven

I would be interested knowing of the pp involved in treatment Jan 1 2016 are still here. Not many.

Virginia

I have filled a ‘lack of treatment’, first, and only had to go as far as the member services department in the huge medical facility I’m in. I was called back to the doctors office less than an hour after calling in my filing to pick up my prescription. I of course had mentioned I was willing to go further with my complaint, as they had not offered anything in the way of an alternative to my not being prescribed my medicine.