A Call to Action for the Chronic Pain Community

A Call to Action for the Chronic Pain Community

By Mary Cremer.

We have the strength to change this world.

Pain patients are strong. We have had to educate ourselves, family, friends and doctors about our conditions. Some of us have chosen surgery or surgeries, some of us have not. Basically, we have had to learn how to be tougher than we could ever imagine possible. We are fighters!!!

It’s now time to unite and fight for our rights, our family’s rights, our children’s rights and future pain patients.

Right now, there is currently an attack on Chronic Pain Patients. The attack started out as attack on opioids, but has now evolved. Our basic right of the doctor/patient relationship is now compromised.

Doctors are being attacked from at least five different sources. The first hit came from the government. Many states have dictated IF a doctor can prescribe meds and the quantity the doctor can prescribe. Some states are stricter than others. Some states have caused confusion. And, if a doctor is able to continue prescribing, they have to jump through hoops to do this.

The second attack on doctors came from their medical insurance companies. Many practice liability insurances are also dictating doses doctors can prescribe.

The third attack is the patient’s insurance. We all have different insurance and doctors are constantly fighting our companies to cover tests and meds for our benefit.

The fourth attack has been from the hospital groups that are the doctor’s “bosses”. Doctors may seem independent. After all, when you have an appointment, it’s just with them. But, it’s not. Many times, they are employed by a hospital group. Their employers are now dictating their thoughts on what doctors should do.

The fifth attack has been from the pharmacies. Many pharmacies also have government intrusion. The pharmacies and pharmacists are being sued. Pharmacies have had to put in place documented reasons patients are on certain meds. This means communication with the doctor and less patient time.

Imagine being a doctor and have endured 8 years or more of medical school, have taken on debt and now would like to treat patients. Instead the government, their liability insurance, our insurance companies, their employers and pharmacies are all dictating OUR care. You can only imagine the amount of confusion and time it takes to follow all the rules being placed on doctors. And, I don’t recall the government, the doctor’s liability insurance, our insurance, or the pharmacies sitting in on our appointments. All of these outside sources are dictating our medical care and they don’t even know us.

So, what can we do? We can FIGHT! We can unite and fight to make the effective changes we need to restore the doctor/patient relationship.

Positive, educational, proactive, calm communication is what is needed to make changes.

Who has the power to make the changes? It’s your elected officials.

We need to ask elected officials for help.

But, we need to make this very clear. When people approach us in a negative way, what do we do? We shut down and it turns us off.  And any negative contacts will actually do more damage than anything.

The real way to make effective changes is to ask for help from our elected officials. We need them to hear our side. We need proactive, educational, positive and calm contacts. We need for our elected official to say that they have been hearing from us. Because, right now they have not.

I challenge every pain patient, their family or friend to do this. Please create an email that contains…

  1.         Who you are and what conditions you have. Also, any procedures you have had. Also, include a little about your life.
  2.         List if you currently have access to pain meds, or if you do not, or if your pain control options are being threatened.
  3.         Describe what pain meds do for you. Describe what quality it brings to your life daily or post-surgery. Describe the functions you can do. Then describe what it would be like if you didn’t have pain meds, or if you have lost them.
  4.         Ask for their help and to restore the doctor/patient relationship.
  5.         Define that the real problem is not with Chronic Pain Patients, but with the illegal drugs that are causing deaths. Ask them to look at the strictest states and see their death toll has only risen.
  6.         When you have your letter created, ONLY SIGN YOUR NAME AND PHONE NUMBER. (The reason this is because this doesn’t show what district you are in.)
  7.         Then you are going to email ALL your elected officials. DO THIS WITH COPY AND PASTE. This means ALL of your state reps (my state has 163 state reps and they have all been emailed 4 times). This also means all of your state level senators, your governor, your state department of social services, your state Medical Association, your senators at the federal level and your state reps at the federal level, your attorney general and president. Then any other elected officials you want to contact too.

We must unite to make changes. You can do this, we can do this. Our future depends on this. We have fought so much and we must fight more. Our voices must be heard as a loud choir.

Mary Cremer has been fighting for change in Missouri working with a key legislator to help convince Governor Parson repeal an executive order issued by his predecessor that may be worsening the treatment for chronic pain patients in the state.

For more on that, read here.

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Authored by: Mary Cremer

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Nesi

After reading comments it is clear that we want to unite. That is a good starting point. Ideas for a safe online location where we can start a list of all our names and email contact info? A head count will reinforce how many of us are suffering. We can go from there.

Steven

Please, anyone who’s able to do anything to announce our horrible suffering and therefore a horrible existence to anyone and everyone who will listen. I made an unofficial survey of people who had any idea that this genocide was going on and I found no one who was not directly involved or know someone who is had any idea our government was capable of and in fact have been forcing The Chronic pain patient into suicide for two years now. People just have no idea and why would they? They are not sick but Heaven help them if they ever do get that way. There is good as dead!

Kathy

We all need to take Mr. Richard Lawherns advise, his comment is listed below. He spoke so much truth and does so much for the pain community. I recently lost two friends from my support group to suicide. We as pain patients need to be advocating and giving pain a voice. The only way we can make a difference is to speak out to those who are willing to actually listen and do something to change the way pain patients are being treated.

What happened to our privacy? No other conditions has to list what my mediation I’m taking!. No privacy if you’re a pain patient!

Kathleen Kaiser

I love the list of who to send the letter to because I have not done half of those people. Since I’ve only sent emails to our 2 senators and our 3 congressman. But I think you missed a golden opportunity on your list of who to send to. I think we should also send them to the people running for office at this time. Since we don’t know who’s going to win we want anyone who could potentially win what they’re running for, we want them to have this info right away and hopefully before other politicians get to them.

Monica Nawrot

I am sorry. Now is not the time to be “calm, polite and professional” when people are in pain and suffering and considering suicide to end the constant pain.

Are there any lawyers out there that can help the country’s Chronic Pain Sufferers unite and form a class action lawsuit ?
I am sorry but I am not educated enough to even know how or where to start. Would a petition be a good place to start ? There must be a website to start petitions ?
I am sorry but politicians are NOT the answer to start this fight.

Mary

Mary: One would think; at this point, we all have some idea the gravity & complexity of this situation. Think again!

Speaking to pharmacists, doctors and patients: I’m hearing (for ex.) patients complaining about not getting cheap prescriptions anymore or more convenient appointments & not understanding how fortunate they are to have care (however minimal)-period.

Having said this; my heart goes out to those of us under forced tapers or abandoned. I don’t want to come off as lacking a compassion chip and I know that feeling all to well: believe me. If you still have care/meds do not pour gasoline on an already high enough fire so to speak.

Healthcare professionals are under tremendous pressure navigating beurocratic red tape & buried beneath documentation protocols to make sure you get your medication. Ticking off the pharmacist just might get you or your Dr. reported. I realize the political travesty but lets pick & choose the appropriate battles. We are no longer living in the “patient/customer comes first, customer is priority & customer is always right..” days within the medical field if we ever were. Many patients would gladly change places with those still being treated.

On another note: there are lobbyists for everything under the sun…my question, lastly, can we not form a lobby?
Also: we do need to be motivated or re-motivated from time to time. Turning back the clock on common sense practices involving pain management will continue to require unity, correct approaches when educating, and persistence. Advocacy in each & every state is crucial. Appreciate the input & motivating message.

Heather W.

It is Mary and advocates like Mary who have fought so many years and worked so long that have made it possible for die-hard anti opioid crusaders like David Juurlink to actually sign a letter in support of chronic disease patients and against forced tapering. Their efforts in education of harm reduction and care of patients have forced these issues to the forefront.
This shows us that we CAN make a change in other areas! Through their determination, it showed we can make a difference!

May I make a suggestion in regards to approaching politicians?

I would strongly encourage that patients focus on their state senators and state representatives.

National officials by and large are not responding and do not have the capacity currently to foment change in our states, where imposition of MME limits and tapering is impacting us the most.

We need to focus on our individual state level. Our elected state politicians for the most part are not corrupted bought off phonies, at least not to the extent that Congress is.
This means each of us reaching out to our state legislature.
We can do this by crafting packets of four/five well chosen articles that really highlight the opioid “crisis” and how it is affecting patients, along with a fact sheet that has a bulleted list of well chosen facts we can discuss with them.
In calling our state reps/senators we need to have the actual state bills that are pending on hand to discuss along with what action we would like done.
Do we want them to revise the bill? Or just vote no?
We need to have the statistics from the region of that particular rep handy to show him/her exactly how this is precisely impacting his/her demographic.
In this way we will be able to show them we are professional and serious about our advocacy and also ready to step up for ourselves and our patient groups. They are ready to listen and learn to those who are prepared and professional. Let’s be those people. Calm, polite and professional.

peter jasz

Hi Mary: Thank you for drawing attention to this matter.

But, as Alex (correctly) points out, the time for, as you state:

“… Positive, educational, proactive, calm communication is what is needed (to make changes)”

…..has long since evaporated.

Although I’m certain you mean well, when I read the following (although accurately stated), I cringe:

” …..Who has the power to make the changes? It’s your elected officials.
We need to ask elected officials for help.”

Let’s re-read that for a moment: We have to ask Elected Political Officials for pain/health help ?

Wow. Indeed, your article pointed the fingers (again correctly) at the very ugly business of politics, insurance, money, legislation etc. as being inextricably involved. And, as bad as that is concerning any other topic, it’s nothing short of criminal (Crimes Against Humanity) when these a-holes are put in charge of someone’s life -as in severe, chronic pain patients whose (near only) life-line are effective opiate prescriptions ???
Let’s make something very clear, right here and right now; there are pain conditions so vile, brutal, agonizing that too many sufferer’s, without adequate pain relief, entertain the idea of death -for some desperate -permanent- relief.
Pain conditions so nasty, I often wonder how so many cope as they do; it’s truly horrific.
And we have to ask our politician’s for help ?

Let’s also make yet another point very clear; these elected bimbo’s/dorks should stick with the job at hand ensuring peace, law/order -and redistribution of a nations wealth. Period.
Who and why were they given such sweeping (criminal) powers ?
They no squat/diddly about health, pain, or the immense suffering endured by those so afflicted.
And we should ” ring them up” -have a nice chat (or maybe over one of their $200. lunches) and beg for THEIR help ?

Let’s cut-to-the-chase; they (all involved in making life so agonizing, miserly) should be charged with Crimes Against Humanity.

Kris Aaron

As a chronic pain patient, I’ve discovered it’s very difficult to explain chronic pain patients’ issues AND the misleading statistics that wrongly indicate America is in the middle of an opioid epidemic in a simple, easily understood email.
Example: Deaths actually caused by illegal opioids are far lower than we’ve been told. The statistics we’re shown by the media include all deaths in which opioids were found, not deaths caused by opioids. Plus, the statistics do NOT distinguish between legal drugs prescribed to the user and illegal drugs, and don’t include excessive alcohol use as a contributing factor if the deceased was old enough to legally drink. Combining opioids and alcohol is a good way to overdose, but beverage industry lobbyists have made sure their products will be kept out of death statistics.
One-third of Americans have experienced chronic pain, but apparently the other two-thirds can’t understand how anyone could resort to opioids as a way to cope with pain. Too many healthy people prefer to take the easy way out and assume we’re addicts, rather than drug dependent.
Perhaps we’d be better off approaching reporters with our stories — if they think we’re worth a story we may stand a better chance of being heard by more people. Politicians receive hundreds of letters every day; they have neither the time or desire to read them, and instead turn them over to interns who respond with pre-written form letters.

Jill

Alex, I like your idea,the trick is finding that one candidate. The media campaign to vilify opioids over the last few years has been so intense the general population truly does view us as addicts. Honestly, even though I’m a college educated, intelligent woman who had a thirty year career in medicine, lecturing and working in diagnostics all across the country they don’t LISTEN to me but believe in their hearts the media hype. And they’re my FAMILY. How do we counter that type of brainwashing? Uniting as a group has been so hard because were all sick! But I’m with you. Will research to try and find that candidate. I think you’re right.

If I may offer some resources? I’ve been writing and advocating in this field of public policy for years, so I’ve seen a few things.

First, I would gently disagree with writing letters. Unless the volume reaches hundreds in an individual legislator’s inbox, they are automatically round-filed without reading beyond a brief scan; by a junior staffer (and not always that much).

Second, I believe there is a more effective way than writing to “get in their faces”. You can look up a legislator’s Washington office and call. Anyone who wants a list of current contact phones and emails can reach me at lawhern@hotmail.com. In fact, the number of emails I receive might become a test of whether readers give enough of a tinker’s damn to actually DO something rather than asking others to do so.

When you reach a legislator’s office, ask to speak with their senior healthcare staffer. Most of the time you will be routed to voice mail or the pickup staffer will ask you for a message to be written down. You need to have words at hand that make your primary points in 60 seconds or less. If you go longer, your message will be round-filed too.

Third: If you want to prepare to lobby your legislators, I can offer an information resource: I’ve published over 50 papers and articles addressing public policy for pain treatment versus addiction. You’re welcome to read at http://www.face-facts.com/Lawhern . And you can always send me a script for fine tuning.

Mary, I truly believe your heart is in the right place. We do need to influence legislators. But mail is too easily ignored when big money interests are hammering legislators every day with the message “do it our way and we’ll contribute money to help you get reelected”.

I’ll get back with a number count in a week or so. I look forward to your mail.

Rich Reifsnyder

Hello,I agree with Marvin and Bob.We need to Lawyer up Now.I wrote and called Senators and Congresspeople in Southern New Jersey about my pain and disability and how the 2016 Opiod Guidelines changed my quality of Life.Like many of us who wrote and called I received a Form Letter on Abortion or Addiction numerous times.These Senators are multi-millionaires with thier own money invested in Addiction Centers or Addiction Medication.Dr Red Lewhern wrote the head of the HHS to investigate the CDC for Malfeasance over the Biased Fictitious 2016 Opiod Guidelines And Thank God a lot of Doctors and Medical Professionals signed a letter to the CDC asking them to evaluate the consequences and harm the Guidelines caused us Disabled CPP,S and Veterans.I read these posts every day,NPR and the PNN,and thousands of Veterans and CPP,S have committed Suicide and 50 to 100 million Veterans and Disabled Intractable Chronic Pain Patients are suffering inhumane tortureous Pain every day since 2016.The Opiod Guidelines were written without one single Pain Doctor,Pain Psychologist or Pain Patient.Look what happened since 2016,Oregon Medicare wants to force taper CPP,S to Zero Opiod Medication,the FDA thinks Pain Patients are hurting their pets to get Pain Meds from the Veternarian,and the FDA/CDC think Pain Patients are injecting Kratom to get High!!You got to be ******kidding me reaching out that far,hurting our pets or people injecting Kratom,this has to End.What more do we want jammed down our throats?Money,Money,They want us Disabled Baby Boomers gone,Dead-Suicide,they tapped the Social Security Fund for decades and we CPP,S are paying the price.Like Bob said we need to Lawyer up Now,not in Two Years.These are crimes against humanity,you can’t take away medication from people with diseases or the Disabled.Even the UN. called it torture,by the way the US believes in torture,look it up in UN members and Torture.I will be the first to donate to a fund to Lawyer Up for these Crimes!!

Alex

I need to keep going – that’s how important I think this all is. Mary, I am in serious hopes that you have lit a match that will start a wildfire! You have with me, and by natural succession I am now personally fired up and trying to make a difference.
Most of us follow chronic pain groups on Facebook and Twitter, some of us participate in them. I for one am a co moderator of a group. So what if we all got on our prospective social media platforms and got all of these groups to unite? Now we have not 20 people responding to Mary’s column – now we have hundreds. And if those hundreds all harassed their congressman or woman maybe someone will listen.Maybe if all of those people started talking to their pain Doc’s maybe they could get some of them on board. How can we get the AMA (American Medical Association) involved. They are being affected too. They are the doctors whose oath is being compromised by the government.
I hate to say it but we need to create at movement like some of us did back in the sixties. We don’t need to have another Woodstock, or smoke pot to get high for fun. But we do need to make enough noise that the media will sink it’s incredibly biased teeth into the cause. We have a common goal. Many of us are staying silent and just being scared, but those of us who for whatever reason will just take keyboard in hand and respond to a post on an obscure website can and should try to make a difference. I’ve made a couple of suggestions here, I’m sure there are many more. If you really want to do something, I’m more than willing to make alot of noise. Contact me at ajstephenssr@gmail.com. LETS BUST THIS THING WIDE OPEN!

Alex

Mary, may I step in here? WE NEED TO DO SOMETHING! All of the folks like me who read and responded to this article are in the same boat. We all have debilitating pain and without our prescribed medications we would have no quality of life at all. So what do we do? As individuals we have no voice. I’m sorry but I don’t think that, at least in my case, writing to any congressional or senatorial representative in my state would have any more result than my writing to the planet Mars. Somehow we need to make proper medical care for chronic pain patients a political issue. Here are my thoughts on that….
If we write to a Democrat we’ll get no where because all the hype that they are blasting out on CNN is to coddle the junkys and vilify the doctors. Let’s face it, the Democrats want to make the entire country dependent on the government, and if that were to happen pain patients would be swept deeper under the rug than we already are. Why??? Because we have always been silent about our needs. We have been forced into a situation without our even knowing it. Family, friends, medical professionals, co-workers – non of them understand what we go through each day, nor do they understand why we need the meds we take to function. If we take meds and function we must be faking our symptoms because we want the drugs. Or, we are simply seeking attention. WE NEED TO UNITE AND MAKE NOISE! ALOT OF NOISE.
What if we were to focus on one political candidate? One who we could get to understand our plight. If we had one person on the national stage who could garner the attention of the networks and spread our message on prime time national TV what do you think those results would be? I think that could work. It’s just a thought, but maybe it’s a direction for us to go in. BUT FIRST WE NEED TO UNITE!

Your article & recommendations were greatly appreciated. I agree with your stating the 5 sectors who endanger the doctor/patient relationship. However I feel that virtually every single practioner & the entire medical community bear much culpability for the adverse effects on relationships. All knew well in advance of the impending changes & it is every single caregivers responsibility to likewise individually address the 5 sectors outlined of their concerns regarding doctor/patient relationships. While at a doctors office today, I literally briefly spoke with 4 separate doctors & nine nurses at random. All concur the negative impact on their patient relationships but NOT A SINGLE MEDICAL PERSON personally addressed their concerns in writing with any officials. Quid Pro Quo Doctors! Why aren’t they all adding their voice to our chorus?????? Sure there are many medical professionals who do go on record with their concerns, but I bet it is less than 1% of the caregiver population. How do we get your article into their hands, eyes & hearts? I am a 12 year successfully managed chronic pain patient who 2 weeks ago was abandoned by a Ft. Myers, FL pain management center. For the first time in my life, I am forced to purchase/use illegal medications to just walk & stay alive. I gave my 9mm pistol to my neighbor because the return of crippling peripheral neuropathic pain combined with convulsive withdrawals had me desperately crawling through my house in search of at least one bullets. As Dr. Albert Schweitzer wrote…”Pain is more terrible lord of mankind than even death itself”! I would welcome death over the torturous prospect of re-experiencing the combined pain & withdrawals that I recently endured.

Sarah

Amen to that! Great article. We need to keep fighting!

Michael

I live in TN. You will get no help in this state. A congresswoman who helped fuel this fire is choice A…the liberal Democrat wants to save us. Between Blue Cross & Medicaid cover 70% of TN residents. Soon we’ll have no support at all. I was diagnosed with DDD 45 yrs ago. Spine fusion in 2008. Basically totally crippled. Never did anything wrong. Didn’t consider it when I moved here 2 yrs ago. Now I’m just screwed.

Melanie Hunter-Olivarez

I have been meaning to write a letter to my lawmakers, but I wasn’t really sure what all to include. Thank you for the list! I will get on this right away and I plan to share this with my other CPP’s .

ElizabethR

I totally agree that there is a need to “unite and fight”! I have already written to my state attorney general (who is currently proposing even more restrictive drug laws), as well as my local representative and senator. Our state legislators require ZIP code ID and do not accept out-of-district communications. I have also emailed my two U.S. senators and representative.

I concur with Alex that we must try to make clear to policymakers the difference between responsible use of prescribed medication for the treatment of chronic pain and addiction. In my experience there are obvious differences. It seems evident that most patients with pain use their medication to retain mobility, remain functional and maintain some quality of life. Their use of medication causes no adverse consequences on major life areas (e.g., physical/mental health, family and relationships, finances, employment or legal status). Depriving them of medication, however, does. Although responsible use in some cases can escalate into addiction, a stable dosage of medication over a period of time with no adverse consequences is not addiction. There are already ample procedures in place to monitor responsible v. irresponsible use of medication.

“Drug addicts” use their substance of choice to get high initially and in the later stages to prevent extremely unpleasant withdrawal symptoms among other individual reasons. Many are in their 20s and 30s and do not have diagnosable chronic medical conditions. In addition, their drug use will eventually take priority over everything else in their lives and, as has been publicized to the point of sensationalism, can result in death. It almost always impacts health, family life, friendships, employment and finances. Those addicted to illegal drugs often get in trouble with the law. They need to be diagnosed and treated, but they are not the same as chronic pain patients.

Mavis Johnson

We have been doing this for years with zero traction. The pain community, overlaps with other patient groups, yet they are all in their own Information Silos. This is by design, social media is set up that way. Our policy makers have already been misinformed by various corporate entities that have a profit motive in our continuing disparagement. They use cherry picked statistics that are designed to mislead. Perhaps they need to be educated on the facts, they clearly don’t care about our anecdotal stories.

Monica Nawrot

This is a great article by Mary Cremer, it is very uplifting and gives a person hope and in doing what she mentions could possibly change things in about five years or more. BUT how can I help my brother now ?He has lived with chronic pain for almost 10 years and I was amazed how much he accomplished, when I was tired, he would keep on going with the help of Oxycontin ! There were days when he needed only one pill and others days he needed more and some days he didn’t need any at all. Does this sound like an addict ! The doctor that was prescribing this medication for pain relief knew him all those years and then suddenly with the new Opioid Guidelines she treated him like an addict. To see him now and know the pain he is in it is unbearable.He is no longer the active, positive, healthy brother I looked up to with awe. So what can I do to help him NOW ? WHY isn’t the doctor who knew him all these years helping him ? WHY aren’t all the doctors standing up against the powers that be, that are killing the people we love by denying them the care that is their right ? As the other person said, my brother is now looked at as an addict. He tried going to two other doctors for help. He had all his records, his medical history, what he was taking for pain and how often he used the prescription. One doctor sent him to a Pain Clinic, HAH ! They gave him an antidepressant and sent him to a therapist who started asking about his childhood ! MY GOD. He is the most mentally healthy person I know. MY GOD. What is happening ?So I am sorry to say, I don’t believe politicians are the answer. We all know what lobbyists are and they know the politicians better than we do.Many doctors might not like to hear this but it is up to The Doctors.The DOCTORS have much more power than the patients. They have to stand up TOGETHER against the insurance companies, against the government, against the pharmaceutical companies. Can you imagine if ALL the DOCTORS went on STRIKE ? to help us.

Karen Henderson

From your lips to God’s ears. I have actually created a beginning outline of all entities involved in the fight for the rights of chronic pain sufferers. It’s at the very beginning, but I can’t decide what it will turn into; book, thesis, symposium, Think Tank, Victim Advocate Group, Etc. None of these groups, patients, doctors, Medicare, insurance companies, DEA, alcohol drugs and tobacco, law enforcement, pharmaceutical companies, pharmacies and legislators, are talking to each other in a meaningful dialogue and the chronic pain user is absolutely left out of the discussion loop. As you mentioned, it means getting the attention of all of these groups in a meaningful, calm, cooperative and productive way. I read an article in this newsletter yesterday saying we are an unnamed group. While we are victims to a point, victim does not really describe us. As a group we are more “Pain Survivors” just trying to have some quality of life which allows us to remain productive members of society. Thank you for this article. You summed it up beautifully. Now if people will respond, we can get something done.

Mary Gerende

This is probably the best article I have read in the group. Yes, I too am tired of being treated unfairly but doctors and pharmacists due to my dependency on opioid pain medications. I chose surgery to relieve my condition, at the time of surgery it was 50/50. I took that chance, however my surgery was not successful. I will live the rest of my life with my illness. No cure for me ever, only future generations. I find a doctor who I like and we build a repor then after a year or so the rules change by outsiders and I am forced to seek out a new doctor. I have dealt with this since 2012 and until I die, unfortunately and I’m only 52. I have followed each doctors rules, tests, counts and still the outsiders keep changing the rules. I hate being included in the opioid group, it’s like I’m a bad person or something. I am going to take your advise and send emails to all the important folks here in NC.
Thanks Mary G

Wow Mary, very concisely stated. I’m sure that many of us have experienced some, if not all of the situations that you described.
My first PM doctor used to constantly pressure me to WEAN, WEAN, WEAN – even after I was diagnosed with breast cancer at 42! I underwent double mastectomy, aggressive chemotherapy & Neulasta injections. Neulasta is a white blood cell booster given the day after chemo & caused me horrific bone pain. I was in so much pain l wanted to stop chemotherapy. My Oncologist had to intervene when PM doc told me that she was “treating me for back pain, not cancer pain”. That woman did not see me as a human being, only an annoying spinal patient.
I now have a wonderful, compassionate PM doctor who understands that weaning medication isn’t appropriate for patients with degenerative conditions.
Thank you for your suggestions & l pray that together we can all make a stand.

Craig Macdonald

I am really sick over this mess I hurt every day and my only crime was busting my ass off paying more taxes than the lazy people.now body pays again every single day and the only thing that helps me get through the day they want to take my pain pills that help me have a some what normal life visiting my grand kids and my little hobby.shame on our government just to get votes don’t care about the good hard working stiffs who pay their wages just procet the. Criminals and people here illegals.the people who don’t want to be on this Earth.Dont care about the folks who just able to hang in their with a little help from or pain meds.

Greg

What you say is true. Doctors now days have become robots. The control that everyone has over them on our care has become rediculouse. As patients our feelings and how are pain effects us witch effects the ones around us doesn’t matter anymore. The doctors choices on how they can treat us and what works best for us doesn’t seem to matter anymore. We are being told that the federal government is trying to get us the best health care. I feel that is not true. To me it’s all about control. It’s hard for someone to truly understand what chronic pain is unless you are one of us that are in chronic pain. Doctors when I was young had the time and was allowed to get to know who I really am and we would talk about what I wanted to do about my options and what I thought about them. This is all gone. Now I feel like just a number and herded like cattle. I feer that the suicide level will rise due to chronic pain patients quality of life will be so bad along with the amount of pain is greater than what they can talorate.

Kathleen Shelby

Now I can’t have my Clonazepam if I’m on Hydrocodone. The new anti anxiety meds does not work. Pain increases anxiety and so on. I just don’t understand. A Dr. in our town just recently lost his license due to prescribing both. My blood pressure is up due to my pain not being controlled. I can’t drive anymore so I can’t do these other “relaxing” therapies. I’m just so tired of being sick.

Jandriene

This is a very well written article. And great great idea!!! And, yes, positive calmness helps our position much more than negativity, yelling, cussing, etc….thank you!

I am so sick of being OPIATE SHAMING..
IT’S A NATIONAL HEROIN/FENTANYL EPIDEMIC, NOT PRESCRIPTION (OPIATES) DRUGS.

SAD BUT TRUE: I have lost family members and friends, and I am always reading about too many young and old who have died from misusing DRUGS. It is tragic, for sure.

HOWEVER, I feel compelled to defend these prescription PAIN killers (opiates and others in that class) that are truly MIRACLE drugs for the 99% of the people who NEED/REQUIRE them and take them AS prescribed. Some people I know have been prescribed them for up to 10 years for chronic debilitating PAIN. They cannot live a quality productive life without them. They are 100% safe when used AS PRESCRIBED.
Please STOP blaming these prescription drugs because 1% abuse them. It’s the illegal street drugs HEROIN/FENTANYL that are killing our family and friends; very, very few from illegally obtained prescription (OXYCONTIN) drugs. It’s the HEROIN/FENTANYL, NOT the synthetically manufactured OPIATES;  i.e. OXYCONTIN.  Alcohol, which has killed and maimed hundreds of thousands of innocent people and destroyed families throughout the years in the USA alone, is a perfect example.

There are always those who will abuse whatever they have assess to.

Acker Beth

Why hasn’t there been a class action suit??! With all the HIPPA policies and procedures why is the patient/doctor confidentiality and the rights for a patients doctor to do what is medically necessary for their patients allowed to be trampled, no bulldozed, over??! How and why is any governmental agency, legislators or others allowed to dictate what a patient needs without taking a patients history and needs into account? A 90lb 5’ grandma doesn’t need the same dose for pain as a 300lb 6’ construction worker, yet they want to make a “scale” to dictate how much can be given? What about diagnoses? What’s needed for some patients with pain that will subside with healing time/modalities is vastly different than an incurable extremely painful condition yet “they” want everyone to fit into a set of rules regardless of actual needs to have some quality of life. Most chronic pain patients have already been through the mud with multiple surgeries, sometimes multiple diagnoses (including misdiagnosies), hundreds of doctor visits, physical therapies, hundreds of trips to the pharmacies, and many other hoops too lengthy to list, only to be treated like a criminal when they’ve not abused or misused a single pill. We all know the overdoses on the nightly news are not from prescriptions they got the conventional way. And with everything we’ve each been through, all in an effort for enough relief to have a functional quality of life, it’s no wonder the suicide rate of chronic patients is rising and will continue to rise directly as a result of this witch hunt. Legislators need to find a way to go after those abusers and those illicit drugs while letting a legitimate doctor treat a legitimate patient legitimately!!!

Alex

Please keep fighting folks. I am with you all having gone through 4 years of anguish and fear before finally getting decent pain control for 7 vertebral fractures. I have been called an addict, malingerer, told to “meditate and accept” all that junk. I am furious! Write. E mail, call your elected officials. Contact everyone you can think of. I am drafting my letters today, remember the letters don’t have to be perfect. We have to push back against this.

Michael Kastnet

So glad and thankful to Ms Cremer and others like her who are educated regarding us Chronic Pain Patients need of medication to have quality of life.

Her call for action to unite us by writing every level of Government (as well as all concerned or perhaps involved) in these changing laws is imperative.

Ensuring that our future of being able to remain on medication our Doctors deem necessary, and helping us is REAL and we must NOT lose those rights.

Not allowing entities like Insurance companies, Pharmacies, and the like to dictate to our Doctors what is and is not appropriate is not only obvious, but imperative.

We MUST unite in our campaign to flood our officials with our personal stories.

We Patients will must NOT lose our rights for much needed medication our Doctors perscribe for our individuals situations and needs.

Much thanks Ms Cremer for sharing your thoughts and knowledge in hopes to unite and guide us on how to keep our rights.

Understanding that we Chronic Pain Patients are not the addicts here but yet are severely affected by the ignorance of others believing that stopping our medication, our quality of life, will end the Opiate War.

The Opiate Problem is real but by attacking us who desperately are in need of medication is not the way to stop the Opiate Problem.

I urge you all to take action NOW as Ms Cremer has outlined. If we lose our Rights we may NEVER get them backagain.

Please go not depend on others to take Action, we all MUST do our parts in writing and demanding that our Doctors are the only one to make these medical decisions for us.

Again thanks Ms Cremer and thanks to my co-sufferers for your anticipated Action which will ensure our current rights.

Michael Kastner
Chronic Pain Sufferer

If you become a member of Doctors of Courage, you could email ALL of the legislators as a representative of us, and as a spokesperson for all of the constituents in their respective states. Not only do we have a listing for all of the health staff ( which are the people you need to correspond with), phone numbers, email addresses, Facebook and twitter addresses, but we have so much more information to use and knowledge to gain.

Alex

Mary, a great post and one long over due to say the least. But here;s the thing. We as pain patients have a credibility problem based on our current situation. We are all branded as junkies. It matters not that we are solid stand up citizens, It matters not that many of us hold down responsible high paying positions, own businesses, and provide employment to others. It doesn’t matter that we are strong, outspoken, well educated, and forward looking members of society. None of that matters, because before we even begin the discussion people know we are pain patients and that by itself has us branded. We use opioid prescription medications therefore in the eyes of all who are exposed to the daily barrage from the media we are junkies. We are no better than those who rob, steal, prostitute themselves or barter for a few dollars worth of heroin.
There has been no distinction made between illegal drug users for whom drug use is a choice and chronic pain patients for whom prescription, medically necessary, monitored, drug use is a necessity. This distinction MUST be made before anything else can happen and I’m afraid that because we are all branded as junkies (and therefore irresponsible losers) no one will pay any heed to our pleas or demands. If you or anyone else reading this can see a way out of this situation PLEASE put your thoughts down because they are important.

The legal system also needs to be used. The legal right to ameliorate a disability with medication is one which State government must honor. States that discriminate against pain patients by limiting which medicines we may use, or in what quantity we may use them, can be sued in federal court under the Americans With Disabilities Act. We patients need to lawyer up and start suing.

Doc Anonymous

Excellent analysis of the main ways that doctors are under attack as a way of attacking pain patients! It seems to me that the PATIENT’s insurance companies are playing a pivotal and sinister role. In many states, the patient insurance companies have formal “investigators” who are quasi-police and even have formal connections to various police agencies. It can be a simple process for an insurance company to initiate a formal complaint against a doctor who is treating a lot of pain patients. Second, the patient insurance companies become the economic lifeblood of the doctor. By placing reimbursement barriers in front of the payments, the insurance companies can literally force doctors to abandon non-interventional pain management.

The interference in the doctor-patient relationship by the 5 groups listed in this article is truly sinister and harmful to tens of thousands of chronic pain patients AND their dwindling number of treating doctors.

Barbara Snow

Right now at this time our politicians are all out campaigning? There far to busy to bother themselves with pretty much anything? So I ask what good would would it do at this time. And then the new Congress doesn’t get seated for a while. Just lost right now. 😢