Conspiracies Against Wellness Radio Broadcast


Hello Luvs,

I was recently a guest on a radio show, “Conspiracies Against Wellness “. I was interviewed by Jonelle Elgaway and I spoke about the Opioid crisis. Please listen and answer my “call to action” plea at the end.

Please feel free to share this. I encourage you to share it so as many people as possible will learn about all that the chronic pain community is going through.

Here’s the link:

Thank you!

https://youtu.be/N8cBhUStCnA

Turn Your Fear Into Action



Yes, it’s a sad day when the U.S. government starts messing with the Dr. and patient relationship. Our legislators are not trained in the management of chronic illnesses nor in the management of chronic pain. This is also true for the pharmacy chains. Since when does a “drug store” get to tell a legitimate M.D. that they won’t follow their instructions? The chief medical officer at CVS health says “We have some situations, in which we feel that there are certain physicians who are prescribing way too high of doses and way too strong of medications,” he said. They are now beginning to limit prespcription opioids. But they don’t have a Dr./patient privilege. They do not know what is wrong with each patient in any given situation, due to that privilege. So I just don’t understand how they are the ones to control this situation? In my opinion, this is for publicity due to what is happening right now with all of the hype of the so called opioid crisis. There are legitimate avenues for the pharmacy chain to report certain specific physicians about whom they are concerns. There seems to be no reason to punish the entire medical profession and pain community for the sins of a few.
 The CVS policy is going above and beyond the “VOLUNTARY” recommendations of the CDC guidelines. These guidelines were given and intended to be only advice for Primary care physicians who treat chronic pain patients. This is even taking the patient care out of the hands of the trained pain management physicians, in my opinion. In an article in Today, by Charles Shamard M.D., on September 22, 2017, it states that CVS plans to roll out the initiatives to control opioid abuse as of February 1, 2018.

“Daily dosage limits will be based on the strength of the painkiller and CVS pharmacists will require the use of immediate-release formulations of opioids before extended-release opioids are dispensed, lowering the risk of tolerance to the highly addictive drugs”.
Stop and take a deep breath, just for a moment. Think about this logically and clearly for a moment and make sure that you read everything you can get your hands on before you become terribly upset. I totally and 100% understand why the chronic pain patients and many physicians in the communities are upset. The government and pharmacies should not be controlling or meddling in these kinds of situations. But if you look closely and think very clearly, this is for new prescriptions. Also, if. You have ever had surgery, the first 7 days are the worst, right? If you need more, then the Dr. may possibly be able to write another one for another 7 days? But in opioid naive persons, a 7 day supply may be alright following a minor surgery? I feel that the surgeon would be the one to know for how long his patient should need to take stronger pain medications. Just try to remember that most of the new guidelines are not for legacy chronic pain patients, who have been doing well on opioids for several years and on steady doses. 
This is the time to not over react and not just complain. This is the time to put on your “thinking cap” and get to work. Find out who your legislators are and send them an email. It’s super easy to do. You just google your state and add “.gov” after the name of your state. A list will appear and you can choose who to write to. Go to the link that says “contact” and send them each an email. You can do it from your bed or your sofa and from inside of your own home. You don’t have to go anyplace or use up much energy. Write something kind and to the point. Most of them do not know the difference between addiction and dependency. They are just going along with the mainstream media hype concerning opioids. You may find that their hearts are in the right place but they just haven’t received any positive information regarding how helpful the opioids can be to some persons with long term chronic pain and chronic pain illnesses. They may not know about how the suicide rate has been rising since all of these restrictions have been put into place. According to Dr. Stefan Kertez, M.D., “A significant number of chronic pain patients are killing themselves, and that should be a concern to a society at large when people die as a result of something done to care for them.” These CDC guidelines are not a law. They are “guidelines” and mostly for Primary Care physicians and not legitimate Pain Management Physicians. But most certainly, I just cannot imagine that they were meant for pharmacy chains. 

Comment:  A friend of mine, named Bob Schubring, wanted to write these comments but WordPress isn’t working properly & it won’t allow People to leave a comment? I don’t understand what’s wrong but I did want his comments to be seen: here are the comments from Bob Schubring :  

Hi Suzanne:

Patients need to form a union.

Individually, we are powerless against corporations, politicians, bureaucrats, and demagogues. If we organize, we can get a lot more done.

A starting point for a National Patients Union, is to create one of the new Association Health Plans (AHPs) that are about to become legalized by an executive order, that will allow people to shop for health insurance sold in another US state, than the state they live in. If we patients unionize ourselves, we could create an AHP and buy healthcare at the best available rate, bargaining collectively with the insurance corporations to get that rate. Our union could bring great pressure on a corporation like CVS, because we could offer them an alternative solution to their governmental problems, than the cowardly solution they are now pursuing.

CVS’ cowardly fear, is that they will be sued for malpractice, whenever a liar checks into a rehab clinic for addiction treatment, then comes out seeking money, and sues CVS for “enabling” his addiction. And CVS’ cowardly solution, is to form an alliance with an enabler of al that lying, addiction “expert” Andrew Kolodny, and attack pain patients and everyone else who is not an addict.

What a National Patients Union could do, is offer the competing drugstore chains the exclusive right to fill our prescriptions. As a union, we could simply agree not to make lies up about the causes of addiction nor to use those lies to win money we don’t deserve, in court. That would give the competing drugstore chain that wins our business, the same protection that cowardly CVS wants to get from liars and cheats, by attacking the rest of their customers

________

That’s my comment.
Hope you are having a low-pain day today.

Bob Schubring

Chronic Pain In A Culture of Intolerance


download-stopthepainTwitter-opioids-e1448411435798

Being a Health advocate/activist” for people like myself, who live with chronic pain; is becoming more of a challenge.  I’m feeling both proactive and protective.  I want to help change the way society and the government thinks about chronic pain and the persons living with the daily struggles from it. I also want to help put a more positive spin on something that is very difficult to stay positive about.  While Governor Chris Christie is becoming the “drug Czar”; he is talking about changing  many lives in a negative way.  Our President is putting persons in charge of what he has only heard of as “the Opioid Epidemic”.  He listens to what others tell him and he reads about statistics or numbers of deaths; not the number of “people who have died”.   Those are people who have passed away not numbers on a screen. These people each have or had their own story to tell and nobody was listening.  I’m trying to get someone to listen to us.   As a chronic pain patient myself, I can say that we feel like the rules of the “game” are being changed, without talking to any of the real players.  When you only are only told one side of a story over and over again; you are not going to get the whole truth or the entire story.  When the President or the Governor talks with people who have lost someone that they love due to a “drug overdose”; then that is the way the story is going to spin.  There are journalists who have lost someone they love, to a drug overdose and they are writing over and over again about the “horrors of the Opioid epidemic”. There are reporters who are speaking against Opioids on the Television and producers making short films about “The Oxycontin Express”.  I can only say that if I was misinformed and heartbroken, that I might do the same thing. But I’m not misinformed and I honestly feel that if I lost someone to an overdose, I would still try not to hurt anyone else while I was in mourning. I wouldn’t try to “punish the whole class for the behavior of one”. I would not want to go on a mission to try and “save everyone else” (while hurting so many and possibly not even knowing) to make myself feel better.

I turned on the TV the other night and one of the news stations had a week long special about “the Opioid Epidemic”. I was yelling at the screen and telling them that they hadn’t a clue! The person they had on as a guest, was someone who had broken his leg, had surgery and had become an Opioid addict! That is not the same thing as someone living with daily chronic pain and knowing that  life will always be this way.  Persons like me who live with chronic pain day in and day out, do need to try physical therapy, and other first choice treatments available.  We realize that we need to give different options a chance.  But when a patient with several high pain illnesses has tried many alternatives; and is not a candidate for other options;  then they/we need reassurance.  We need to know that the medications that many of us have taken for several years and that give some semblance of a life; are going to remain available and nobody will rip the rug out from under us!

I am in a group of people called “chronic pain patients”. We are not drug addicts! The definition of an addict, according to the Dictionary (on Definitions.com) is this:  “to devote or surrender oneself to something habitually or obsessively”.  I can speak for myself and the hundreds of chronic pain support group members that I mentor.  We  take only the medications prescribed to us by our physicians and/or Pain Management Physicians.  To clarify, I will explain further the difference between the addict and the pain patient.  The majority of chronic pain patients take their prescription pain medications (or Opioids) responsibly.  The medications for pain are taken per the instructions of a legitimate pain management physician or well known doctor.  Long time pain patients continue on a steady dose of pain medications and do not crave more than that. In fact, the truth is that just about all chronic pain patients, myself included, don’t want to be on the medications that we are taking.  On the other hand, an addict has thoughts about their medications/drugs constantly and overwhelmingly.  They can’t function because they’re thinking about their next dose all day long.

I read an article awhile back called “The Word is Credibility-Not Stigma-in the Prescription Opioid/Heroin Epidemic”; that really hit a nerve with me.  It upset me because the writer puts down the responsible chronic pain patients and “lumps” us together in the same category as heroin addicts.  She wrote about the deaths of people who have overdosed.  But how many of those deaths were people who took only their prescribed dosage of pain medications?  I read another article in which the writer (*Denise Molohon, a guest columnist for PNN January-2016)) stated that “the CDC even admits to giving out skewed data”.  The CDC has qualifiers for their “Morbidity and Mortality weekly report.  She researched the information that she was given and found that those qualifiers are as follows:

  • “approximately 1/5 of drug overdose deaths lack information on the specific drugs involved. Some of these deaths might involve opioids.”
  • “Heroin deaths might be misclassified as morphine because morphine and heroin are metabolized similarly, which might result in an underreporting of heroin overdose deaths”

The writer also stated that “if heroin deaths are being misclassified as morphine, which results in the “underreporting” of heroin overdose deaths, then wouldn’t the opposite also be true? That there is “over-reporting” of morphine deaths, which are then misclassified as prescription Opioid deaths?”  Also, when we are reading or hearing reports about fentanyl overdose deaths; most of those deaths are from street drugs fentanyl and not the prescription pain medication.  We just can’t lump medications and street drugs together, that is irresponsible.  Only “5% of people who are prescribed Opioid pain medications, go on to become addicted”,  according to our own National Pain Report in November 2015.  As a legitimate chronic pain patient, I can verify that we only take pain medications to be relieved of horrible daily chronic pain, nerve pain and the pain from such illnesses as CRPS plus many others.  We don’t become “addicted” to our prescription pain medications.  Our bodies may become tolerant or “dependent”, but  we are not addicts.

There are support systems such as the U.S. Pain Foundation and RSDSA who encourage the chronic pain patients to not be hopeless.  They empower us and encourage us to do whatever we can do but never more than that.  We have a voice and it needs to be heard.  Anyone who hasn’t experienced chronic pain first hand or even as a caregiver, hasn’t any idea what it’s like to be in horrible pain 24/7/365.  When you are finally given something to alleviate that pain somewhat (but never 100%), it is a relief.  But then because of the people or groups who are working very hard to take our pain medications away, we become fearful each month that goes by.  We fear that one method that helps us to get out of bed each morning without writhing in pain, crying and screaming out in horrible nerve pain; could be taken away at any moment.

I feel that people who are doing this are doing it for the wrong reasons.  People need to be educated regarding Opioids instead of being afraid of them.  There are some chronic pain patients who are not candidates for other types of pain control, such as the pain pump or the spinal cord stimulater (SCS).  Taking a medication away that helps so many pain patients to just put their feet on the ground in the morning, seems cruel.  Hurting someone because you have felt “wronged”, is just terrible. There needs to be some kind of shelter from the world of intolerance.

 

 

 

 

 

The Opioid Conundrum 


 


Hello Luvs,

In light of this 2016 “Pain Awareness Month” and with what happened so recently to my friend, fellow pain warrior and fellow U.S. Pain Foundation Ambassador; I feel the urge to tell a story. It’s actually two stories, hers &  mine, but they are  within the same idea and fit in this article.

So our own dear Emily was out of town doing some advocacy work and ran out of her pain medication! She takes a synthetic opioid “Tramadol”. Her Dr nor pharmacy would help her as she was miles away in so much pain that she could not drive! She tried to call in and ask if she could just “get a few meds to get her through until she returned home”. Again, the answer was “No”! She was crying and almost hysterical calling around to different places, asking for help. She knows, she said “what she must’ve sounded like” to those on the other end of the telephone! But just like me, Emily never wanted these medications! Like me, she was reluctant to start them because she never wanted to be dependent on the meds! I went through that same dilemma for 3 years, until the PMD had his pain Psychologist, talk me into it and told me “not to ever be afraid” and to “trust them”! They even tested my psychological profile, which proved that “I don’t have an addictive personality “!

I have been through this similar situation once on a trip and then again at the end of my journey with one type of pain medication.

My family and I were returning home from AZ during our February break vacation. It was about 2009 & many planes were not leaving on time or at all! I had my wheelchair, which had already been boarded onto the airplane. I was prescribed Fentanyl “lollipops” for breakthrough pain and only brought enough for the trip. Suddenly on a loud speaker, it was announced that our plane could be delayed until Wednesday or Thursday! This was Sunday at noon! Let alone the fact that my husband is a teacher and had to return to work that next day, Monday! I was frantic, afraid, hysterical and worried all in one big thought pattern!! My wheelchair was already gone onto the plane and I could be in pain for those next 3 or 4 days! I’d already lived through a heart attack and a stroke /CVA ! I would go through withdrawals! I’d feel horribly ill and possibly suffer seizures or subsequent stroke!!??? I was so afraid and finally relieved when at the last minute they told us to board the plane quickly “because the pilot & staff had to be up in the air within 10 minutes or they’d be grounded due to too many logged working hours”!! We made it home without a trauma, but I knew in my heart that I absolutely despised being “married” to these medications!!

I relented and started taking the Opioids after 3 yrs of epidural, injections, PT/OT (for 8 yrs total), biofeedback & more! I was convinced to take them and told “not to fear”! 

In 2014, I got a letter from our medical insurance company, stating that I “had to have a pain management physician agree with my General physicians treatment plan” or they’d stop paying for my medications altogether!  The very next day I had an appointment with my GP. (*side note:  after 3 + years of the misc treatments , including pain meds, my pain managemnt Dr. told me that due to my Combined immune deficiency disease, I was no longer a candidate for the Spinal Cord Stimulator or the Intrathecal Pain pump! He told me that he was “looked at under a microscope by the Federal govt.. Therefore he was “passing me over to my GP” for medications only. He said he’d consult whenever needed for ideas etc.)

I went to my scheduled appointment with my GP of 13 -14 years, the next day. I spent the entire appointment crying, while the Dr. I’d entrusted with my medical care for all of those years, blankly stared at me! He  only muttered the words “I’m leaving, today’s my last day. I want to spend more time with my kids so I’m going to work at an Urgent care!” First of all, that was very “fishy” from the start! When he became a Dr., married and later had 2 kids; he knew what he’d signed up for! 

I left and had to pay a $30 co-pay to cry for 40 minutes! Most of that time was with the M.A. Consoling me as she reaffirmed that “nothing would change”! That Dr., his nurse & his MA, told me that “the other Dr. in that practice would take over my care & nothing would change”! My ex-Dr also told me that he’d “personally speak to my old pain Dr. & get him to sign the papers for the insurance co. Not to fear”! Secondly, he said that he’d forward my treatment plan and records to that PMD, and all would be fine, and everything would stay the same!

A few weeks later, I went to see my old pain Dr and he told me that he knew that “my pain was real and that I have multiple real and high pain issues”! But that I was to go to a “treatment center “! Then afterwards I could possibly see him again. But only after I went to his “friend”! He next explained to my husband and me, that “it wasn’t me; but he wanted no part of that other Dr.’s mess!”(my old GP). He explained that my old GP had been investigated by the Feds and had to go work at an Urgent care because he was fired from that practice  & unable to write “for pain meds”any longer! I was in tears crying and begging him to take me back! I cried and through my tears, I explained that “I had never even smoked cigarettes, did never do any kind of drugs and had not drank alcohol!” I promised him that “I was strong & I could get down off of the Fentanyl lollipops all by myself, with my husbands love and support! I made an appointment with him for 2-3 weeks later and I promised him that I’d wean down by myself. He allowed me to make the appointment! 

I returned to that PMD’s office 2-3 weeks later and down off of the Fentanyl lollipops by about 70%! He had a young 17 yr. old office girl come to tell me that “he still won’t see me unless or until I see his friend, the addiction specialist” (I researched & later found out this info.)! I cried and begged for help and I was afraid! 

I visited at least 5 Pain Management physicians! All of them looked at me like either  I was a “Lepar” or my case was too difficult and they did not want to bother ! Time was drawing near when I’d be totally out of those lollipops for good. Finally, the partner, actually the owner of the GP’s practice,(who’s known me and my family since the 1980’s), told me that I’d proven to him that I could go down on my own and he’d “take me on only if I was 100% off of the lollipops AND the oral meds &/or patches that I’d been prescribed”!  I promised that I could do it. I was terrified because no one had my best interest in their heart or mind! I had no way for future pain relief and the nation was going berserk over pain management Opioids!

What happened to this nation? Why am I suddenly categorized and scrutinized? Some movie stars and magazine reporters family members had died from over dosages; therefore now I’m an “addict”!?? There’s a big difference people!!! There’s a huge personality profile difference between an addict and someone who is dependent on Opioids for several nerve pain diseases and high pain diagnosed illnesses! An “addict” craves their “fix”! They live to take  medications, whereas, I take my medications to live! The addict gets a “high” from the Narcotics or Opioids.  I wouldn’t take them if they did not relieve my high amount of nerve pain due to RSD/CRPS and other pain illnesses from A to Z!

 I did finally find a good, kind and respectful Pain management physician. He did tell me that I had to discontinue the Fentanyl lollipops if I wanted him to be my Dr. He told me to take my last one on the eve of July 12, 2015. He gave me different Opioids and he was pleased that I’d gone down by myself, to 1/2 of the amount of Fentanyl patch than what Id been on under that first GP’s care.

I took my last Fentanyl lollipop on July 12, 2015. I had to go through withdrawals even though I’d decreased the lollipops by 90%! It was a horrible, awful and painful experience that I’d never wish on my worst enemy! I needed something for my blood pressure spikes! The nausea and vomiting too! I needed meds for calming me and I just needed time to get off of them 100%! I was in pain and miserable for a good 3 weeks, then down just a notch for 3 more. It’s was scary for my husband and a nightmare for me. I thank God that I’m a very strong willed person. I did it and I came out the other side! I NEVER want to go through that again!

I never want to be dismissed and sent to an opioid treatment center because….. I did it myself! I certainly didn’t want that following me around in my medical records for the rest of my life; when I never have never been and never will be an addict!! Yes, I’m still taking an oral Opioid and 1/2 of the amount of Fentanyl patch that Id been on under that GP’s care! 

I thought he cared about me as a long term patient! I thought he was kind and that he was the best Dr ever, because he “listened” to me! Well, do you know what? That’s all he did! He listened to me & then he wrote prescriptions and stared off into space with a kind look now & again. He never tried to help me by physically “doing” something for me–except lifting a pen!  He knew how much medication I was on! He knew it was a dangerously high amount of Opiods for someone like me; No…for anyone!!  He was not doing me any favors and he was digging me an early grave! He  didn’t care at all for my husband, daughters & granddaughters; my family or my life.

What happened when my ex-GP got in trouble and left, was a blessing in disguise. Yes, I had to go through a lot to get where I am today! I’m thankful that I have God in my life and that I’m a strong person. I thank God that I had my husband there by my side to help me through it all! I also thank God that I am here today and that I can tell my story. I only pray that my writing &  my story will help someone else in the future.

It’s because of Doctors like my ex- GP, Dr Bullach, who didn’t truly care about curing or attempting to fix medical problems and/or pain; but who only wrote prescriptions. Also then due to the actions of some celebrities like Prince, Michael Jackson and the others that abused medicines for pain; that we are in this situation today. Also the “regular non celebrity people” that abuse, modify & sell these opiods.  It is all of them who’ve ruined it for all of us. We are the faces of the people who are dedicated to getting well and trying to live some semblance of a life. All the while we are also struggling with the management of our high pain illnesses. We fight against labels and against those physicians involved in the group called “PROP (Physicians for Responsible Opioid Prescribing)”, and others in the medical profession who give us these labels!

Lastly, I need to say one more thing while Im on my “soapbox”. If someone who you loved died from an overdose, I send you my most sincere condolences. But because of your anger, loss and fear; please don’t take it out on the people who are diligent in taking these medications responsibly?! Please don’t pull the rug out from under my life, our lives because you are mourning. Maybe you feel that you must right a wrong!  Please everyone, do not put all of us into the same category as those who abuse illegal substances! Most importantly, if you are in a position of being a reporter or news writer or Television newscaster, please don’t abuse your privileges by using your job as a stage for fighting against your own personal demons!

-References: Emily’s story from U.S. Pain Foundation website at: USPainFoundation.org (originally from Rep-ap.com article: “Side effect of drug fight means some are left to suffer”)

-Feature photo is originally from: USPainFoundation.org


So Called “Opioid Epidemic” Is Harming Real Patients


A very close friend of mine, Sheryl Pietrick Donnell, wrote an article recently,that was posted in the Chicago Tribune Newspaper!  I think it’s  wonderfully written & thought out. I want to share it here with you, & with her permission:  ***************************

This is so outrageous. The so called epidemic is harming real patients. Of the 76 million prescriptions filled last year, there were a total of 18,893 total Opioid related deaths. Mind you, this is a very sick population you begin with and this number includes suicides and stolen medication related deaths as well as the ever increasing number of deaths from suicidal patients who have had their medication reduced so dramatically, their pain has made them feel suicide is their only hope. It also includes all benzodiapams. These are sedative like drugs such as Valium and Xanax, another entirely different class of drug used for completely different purposes.
Compare the 18k of Opioid deaths to the 88k of Alcohol related deaths annually. Is anyone calling for prohibition? Why not? It doesn’t work? Right. Guess what? It doesn’t work for Opioids either. We have seen a dramatic increase in Heroin related deaths since this Crack down on opioid prescriptions too.

What’s the solution? First, chronic pain patients are not addicts. We are in pain and need relief to function. Leave us out of this. We aren’t the problem. Our medication use has been stable and we need to be helped.

Second, TREATMENT CENTERS! If you have an addict, removing one source of a drug does not cure them. Addicts will find a way to get their fix, unless they can get treatment and studies show it is cheaper to treat than incarcerate or hospitalize long term from brain damage from accidental over doses.

There are so many things that are far more dangerous in this country right now than pain medicine for legitimate pain patients. And pain patients need your voices. No prohibition for sick patients. This country would never stand for taking away medication from diabetics, why is it OK to do it to us?

My Life And The War On Pain Patients (*I was A Guest Columnist For PainNewsNetwork.org)


I had the pleasure of being a guest columnist for the Pain News Network. It’s a non-profit, Independant online news scource commentary for chronic pain & pain management. Here’s my article on Dec 7, 2015:
My Life and the War on Pain Patients

December 07, 2015

By Suzanne Stewart, Guest Columnist

One of the arguments against gun control is that the “bad guys” will always have access and the “good guys” will die because their weapons are taken away.

That’s what’s happening now to chronic pain patients! We are fighting a war against being robbed of the very weapons we need to fight. I have complex regional pain syndrome (CRPS) and I’m fighting to live not “pain free,” but with less pain and more living.

Those in positions to help, need to take the time to do so. All 50 states now have proclamations that explain the burning, fire-like pain of CRPS. They discuss allodynia, or extreme sensitivity to touch, and the pain it brings.

But all of this means nothing if the government, FDA,CDC, physicians, and pharmacies take away the means of lessening our pain. We follow the rules, sign contracts with our pain doctors, and jump through hoops to get what we need to try and live some kind of life.

On the other side of the spectrum are those who don’t follow rules and who break laws. But they have a different disease called addiction and they ruin it for all of us. Only about 5% of opioid prescribed patients are addicted, yet they are making us all feel like criminals.

Would these same agencies and officials take anti-depressants away from the hopeless, or insulin from a diabetic?

 SUZANNE STEWART

The CDC’s new opioid prescribing guidelines could make things a lot worse next year. Many physicians are already refusing to give medicine for pain when it is truly needed. But those who who are true addicts always find a way to get what they need, while law abiding citizens, suffering daily, have no means other than self advocating. We need to rally and try to do something about this travesty.

Remember, we are not addicts! We are patients with chronic pain, who’s bodies are dependent on medications that help us live. Without proper pain control, there’s nothing left.

It is despicable that some pain doctors are being forced to push invasive surgeries on more patients. Physicians who pledged to “do no harm” will do surgery, instead of prescribing the medicine so desperately needed for the real chronic pain population.

There are new controversial prescribing guidelines coming and some already in effect. These are leading to more and more restrictions put upon our primary care physicians and even tying the hands of our pain management doctors. The CDC, FDA, and other groups think that they know more about pain and pain management, but when have they ever studied such things?

They are making a fake war on prescription drugs, when it’s really some kind of smokescreen for saving money!

I say pick on the real criminals, not the chronic pain sufferers. I went through an awful experience last year, when my doctor of 12 years unexpectedly left his practice under a cloud of suspicion. I never wanted to take any of these meds. I never smoked or drank! I was just naive enough to think that I could finally trust someone in this life and then the rug was pulled out from under me.

I’ve read that they are taking most pain medications away from anyone with non-malignant pain. Who are these non-medical personnel, these agencies, to say that malignant cancer pain is worse than non-malignant pain? Unless they’ve experienced either, how would they know? CRPS is #43 on the McGill pain index, right next to childbirth or amputation of a finger.

These lay people and agencies are trying to tell us that exercise and healthy eating habits, along with physical therapy and “behavioral therapy,” are alternatives to pain medication. They say that the goal is to stop the overdoses and prescription drug abuse.

The “addiction specialists” scream “HYPERALGESIA” to everyone on opioids for any length of time. They say the pain meds stop working and that we all get addicted! We are all individuals whose bodies may become physically dependent, but that’s very different from addiction. If it is working, then how can it be hyperalgesia?

In all honesty, if the doctor is a good one, he or she will only prescribe the amount needed. Why take it away if the patient and doctor are doing everything right and when it gives some relief? The innocents should not suffer for the crimes of a few.

Many patient advocacy groups have written to the CDC and the FDA and explained that they are not being transparent. They used biased teams to make up these new rules and guidelines. They didn’t listen to the voices of the doctors and patients who live in the pain world. Many of the people who put these new rules together have a monetary gain.

One physician wrote in the Pain News Network that he has had patients on high doses of opioids for over 20 years and they have led quality lives. He also agrees that taking these meds from patients who’ve been on long term dosages is cruel and inhumane.

Sometimes people who want to change things to save a few dollars or get their products pushed, such as spinal cord stimulators and pain pumps, are not thinking of patients like me, who do not fit inside a nice neat box. My issues are different. I need these pain meds to survive.

So many lives have been lost because pain was not mangaged well! Chronic pain can kill you because it causes so many other issues and there’s a snowball effect when pain is not controlled.

Please use your voice and be heard. We need to form advocacy groups that will work together for the common good. Let’s stick together and not allow ourselves to be treated so inhumanely.

Suzanne Stewart lives in Michigan. She suffers from CRPS and several other chronic pain conditions caused by a car accident.

Pain News Network invites other readers to share their stories with us.

Send them to: editor@PainNewsNetwork.org.

Suzanne Stewart

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

***************************

Who is & what is “Pain News Network?” 

(***this article and this little section regarding what this online Independant news scource is all about;  was copied and pasted right from their website so that you would get the direct information. I copied & pasted my article as well for this post, so you’d get the full newspaper article. Please visit them directly at:  PainNewsNetwork.org)

Pain News Network is a non-profit, independent online news source for information and commentary about chronic pain and pain management. Our mission is to inform, connect and educate pain sufferers, caregivers and health care providers about the pain experience.

It is estimated that 1.5 billion people worldwide have suffered from chronic pain — including about 100 million Americans. Although chronic pain is a common experience, many pain sufferers feel isolated and misunderstood by their doctors, co-workers, families and friends. Many also go untreated or under-treated by the healthcare system.

Our reporters and columnists cover not only the latest research, regulations and treatments for chronic pain, but the many social and financial challenges faced by pain sufferers — and the remarkable courage they display coping with what is often a lifetime illness.

Pain News Network is a Google News certified site. We are also proud members of the Association of Health Care Journalists and the California Association of Nonprofits

From The Heart, About The War Against True Chronic Pain Sufferers!!


a collage of support for CRPS 

Hello Luvs,

Think back to the Gun laws.  Remember how some citizens were against taking guns away from the “people”? The reason being, that the “bad guys” will always have access to them and the “good guys” who are in need of protection; get killed in the meantime because their safety net, their weapons to fight against being robbed were taken away from them! Well, my friends, the same thing is happening now, this 2016;  to “real pain patients” fighting against being “robbed” of their “safety net, their weaponsto fight against the chronic intractable pain, and nerve pain that “WE” live with day in and day out. Yes, I am one of those people suffering and trying to be a “pain warrior”.  While I am fighting yet another battle to live maybe not “pain free”; but possibly with less pain and more living!

There are several of us, my fellow pain/health advocates and myself; who have been and are writing to anyone and everyone who will take the time to listen to our plea. All 50 states now have Proclamations and/or House Resolutions (in the state of Michigan, my HR is #267 from 2013) that explain CRPS and give us an “Awareness day/month” etc. They explain to the skeptical family members and the Physicians who have no idea what CRPS is all about.  They give us substance to show to our families, Physicians, lawyers and WC case claims people.  These Proclamations and my House Resolution #267 in Michigan, explain all about the horrible, burning, “on fire-like” pain of CRPS. They talk of the allodynia, or the extra over sensitivity to touch and the pain that the softest touch can bring about. But all of this means nothing if they, meaning whoever “they” are; including but not limited to: the government, the CDC, FDA, Physicians, Pharmacies (especially big chain ones) and/or all of the above, take away our means of lessening our REAL debilitating, horrific, burning, “fire-like” pain!  We follow the rules, sign contracts with our pain Dr’s and urinate in a cup at the request of a Physician; all because we have to jump through hoops to now get what we need to try and live some semblance of a life. Most of us don’t even remember what that is anymore, actually!  While on the other side of the spectrum, as usual, the people who don’t follow the rules, those who break laws and essentially don’t give a damned about anyone except themselves and getting their “fix” because they have a different disease called “addiction” and “they” ruin it for all of us.

Would these same agencies and officials take glasses away from people who’s eyesight is not good? Would they take a white cane from the blind woman who needs that cane to make sure she is seen so that she won’t get hit by a car? Would they take anti-depressants from the hopeless, or Insulin from a Diabetic? Is this what is going to start happening? Are they going to also make the Deaf or the Blind feel “guilty” for using other methods of reading or “speaking”, by limiting braille or American Sign Language? Are we going back to the days of “tying the hands of the Deaf behind their backs” so they would be forced to learn to speak a language that they are unable to hear? Well, I am Hearing Impaired now, due to a Motor Vehicle accident in 2002. I suffered an MTBI or Mild Traumatic Brain injury. I have nerve hearing loss in both ears “Moderate”. I have 2 hearing aids and is someone going to take those too? (Actually, they can have the hearing aids, I hate them and I hate the background noise! So if that would help the situation, they can take those away from me!)…Deaf people were once made to feel “bad or guilty” for using their own Naturally formed language called “ASL”. It is part of Deaf culture, yet they were punished for utilizing something that was very much needed for them to live any kind of life worth living.

The same is true today for those of us in Chronic pain, with nerve pain, Polyneuropathy and/or CRPS, “Complex Regional Pain Syndrome” and other painful illnesses. “They” are trying to make us feel like “criminals” and lower an already lowered self esteem in some of us. Many of us have been through the rigors of the Auto case claims adjusters, who have the power to take everything away with the swipe of a pen!  Others have been through the hell of a W.C. case and Oh how they make these people feel like they really “wanted” to get this pain and be injured on the job and never be able to work again! It’s ruthless and tough out there today for people living with chronic pain illnesses, like me.  I’m an advocate, a blogger and I have a couple of support groups that I am an administrator for. I try with all of my might to spread awareness, fund-raise, write to the people who can do something to help and talk to those who would help if they could.

But this year in 2016, it is going to continue to get worse unless we rally around and try to do something about this travesty! This year the new prescribing guidelines are getting more horrible. The Physicians who were once very good and capable at what they did and cared about people living with real and horrible chronic pain day in and day out; these same Dr’s are cowering and refusing to give medicine for pain where it is truly needed. Yet….once again..as I’ve said above; those who want it, and who are true “addicts” will be able to find a way to get what they need! While  law abiding citizens, suffering daily, have no other means than trying to advocate for ourselves  and continue to try and do what we can do…. in a calm, legal and respectful manner.  We are not “addicts”! We are people who are suffering with a horrific daily pain and who are “dependent” upon a pill, a patch, a spray or a losenges; to get through our daily routines.  Some of those “routines” involve mostly sitting in a “Lazy Boy chair” for many hours per day, trying to be as free from pain as possible because moving too much means more pain later! It is so sad when taking a shower is so painful, that it is very draining and the rest of the day is pretty much left to doing not much of anything else after taking care of basic needs.

We need someone to listen to us! Whether it is Pain News Network, National Pain Report, the CDC, FDA, a state Representative or a Federal representative. We need someone to help us; someone who care and who is understanding and knowledgeable in such matters. It is despicable that some pain Dr’s now are being forced to “push” spinal cord stimulator surgery or intrathecal pain pump surgeries on many more people than they would have in the past.  Surgery has much higher risks of something bad or negative happening, than taking a pill; for crying out loud!! Really?? Are they, the Physicians who have committed to “Do No Harm”, going to be “pushing surgeries” now, so they won’t be scrutinized for passing out the medicine so desperately needed by the chronic pain; the REAL chronic pain population of America? Like I mentioned above, are these same Dr’s going to take away the much needed medications from their chronic pain sufferers?  People with illnesses such as RSD/CRPS  and other such horribly painful diseases? Will they then be taking the prosthetic leg from an amputee? If they did that, then that person without a leg of flesh and bones; would fall to the ground and not be able to stand up.  Just like if they take away our medicine, we will be falling one by one and we’ll be unable to get up.

There are new controversial prescribing guidelines coming and some already in effect. These are leading to more and more restrictions put upon our GP’s and even tying the hands of our pain management Dr’s. The CDC, FDA, and other special groups truly think that they know more about pain and pain management, when they have never studied such things? They are making it all about some big and fake “war on prescription drugs”! This is some kind of smokescreen for either saving money or wanting to rid society of the less productive members!  They aren’t even letting someone go home from the emergency room anymore with a few pills to get them through until they can be seen by a pain specialist. They refuse to give Opioids to anyone anymore at an emergency room setting.  Too many people went there for the wrong reasons and they somehow “faked out” the Physicians and nurses and now we, the true pain patients of these times; are suffering because of the “bad guys” who faked out the ER Docs, or the addicts who went to several Dr’s and Pharmacies and ruined everything for all of us! My poor relative tore his sternum and had to go to the ER, thinking he was having a heart attack. That kind of pain is acute, granted; but it is very very painful! Yet he came home with only something to “knock him out”; a sedative, tranquilizer. But he was not given anything to help his horrible acute pain at home. He was sent home after it was found that it was not his heart, yet a torn sternum muscle feels very painful, I’ve heard! Luckily within a few weeks, his pain will be all gone. Unlike my pain which will be with me for my lifetime. But just a year ago when another relative had to go to the ER for stomach pains, he was found to have Diverticulitis and given a class II pain medication to take at home for his pain, until he could get in to see the specialist. Now when that same scenario happens today, we will get sent home with nothing except NSAID’s and tranquilizers! In my own opinion, the tranquilizer is worse because you could get hurt at work or going someplace etc…It is much less safe than giving a few Opioids to get through until you can get an appointment with a specialist.

Well, I say “Pick on the real criminals”, not the “weak or the ill chronic pain sufferers”! I feel afraid and “bullied”, even though I’ve not experienced most of this yet. I pray that I never do. I have experienced enough issues with my Dr. of 12 years leaving me and his entire practice after having written several too many pain prescriptions and padding his own pockets! But what he did was still not my fault! I did nothing wrong! I am a lay person who did what my Dr. told me to do to alleviate my CRPS pain, Chiari I pain and the pain of multiple herniated/bulging discs, RA and OA etc. I never wanted to take any of these meds. I never smoked, drank or took any drugs; not ever! I was just naive enough to think that I could finally trust someone in this life and then the rug was pulled out from under me. (you can read about this in my prior blog posts). I had this happen to me this past year and when I tried to go and see the pain Dr. who originally saw me for several years following the car accident, he said that he “didn’t want any part of that other medical office’s mess”. I guess that was referring to me as a “mess” that he didn’t want to deal with! How rude and inconsiderate of him! I am a real person with feelings and so much pain, that some days I don’t know how I will make it through.

I’ve had the hardest time trying to find a new general Dr. to guide me and watch over me with my history of  chronic pain and dealing with full body “systemic” CRPS now. I’ve had really crude things said to me by a so-called professional physician! Insinuating that I could go to an “addiction pain specialist”. WHAT for? Why? I am not “addicted”! Again, I say, I am a chronic pain sufferer/warrior who has so many real and true pain diagnosis’ and I needed a “pain management specialist”! Which, thank goodness and thank God, I did find this past Summer!

It’s again, very sad that these agencies are truly “pushing” surgery upon people instead of a simple pill that could help. Surgery is much more invasive, painful and not to mention the high cost! OHHHH I get it now…maybe that’s it after all??? They get more money from surgeries!! Hmmmm…..???

Well, I’ve also read that they are taking almost all pain medications away from anyone who doesn’t have Cancer pain. But who are “they” to say that one pain is worse or better than another, unless they’ve experienced both kinds? My cousin had Cancer and she felt sorry for me and did really well with the chemotherapy and such. No, it was not a “picnic” of course it was still horrible. But she feels that my long term, burning, “on fire” pain of CRPS, is much worse to handle than what she even went through with her Cancer! Can you imagine that?

The agencies are trying to also push exercise and healthy eating habits, along with PT and “behavioral therapy” as an alternative to “pills” to help pain. They are saying that the goal in all of this is to stop the overdoses and the prescription drug abuse. Well, I say to that and to them: “A person can only take the medication given to them by their Dr. and if the Dr. is a good one, he or she will only prescribe the amount needed. Then why take it away if the patient is doing everything right ? If I am doing what I am told and only taking what I am allowed to take, then why take it away from me when it gives me some kind of  a little bit of so called “life”? There are only bad Dr’s and bad people who are hurting the rest of us. The innocents should not suffer because of the crimes of a few!

The main issue here also, is that these new guidelines are not medically sound or proven (according to Pain News Network).  The CDC proclaimed that they used a panel of different members from several different medical backgrounds for the grounds of these changes in prescribing or rather now non-prescribing of Opioids. Not allowing any pain medications to help alleviate real and true chronic, long term pain for patients dealing with chronic long term horrible pain day in and day out! It is very scary to even Pain advocates and patients alike that these new guidelines will be taking away any kind of life we once had. Those “people” tried to say that the pain meds stop working for everyone. that everyone gets addicted and gets Hyperalgesia and that the meds stop working for everyone. This way they are “lumping” together “everyone” and we are all individuals. My pain has been managed pretty well, with some ups and downs but  I never ask for more. I do what I’m asked to do and I do what I’m told to do. I have to make my life work around my pain and my meds and my lowered medications.

Many patient advocate groups have written to the CDC and the FDA and explained that they are not being transparent. They used biased teams of people to make up these new “rules” and guidelines. They didn’t listen to the voices of the Dr’s and people who live in the “Pain world”. They also found that many of the people who put these new rules together have a monetary gain in such matters! The government and these agencies are practicing inhumane treatment towards real and true pain patients.  They allowed insurance agencies and others who would gain from these guidelines to make decisions for us.

The things that are occurring are illogical and inconsiderate; let alone inhumane! I have been on a certain dosage of medications since first my car accident in 2002, when I suffered multiple injuries and surgeries (10). Then I had a stroke and a heart attack in 2005 and 2006. Then later in 2007, I suffered after a foot surgery and ended up with CRPS in my right foot, which then traveled to my left foot, up to both knees. Then when I had a pacemaker surgery in 2013, my pectoral muscle was found to have worn a hole right thru it, from my 1st pacemaker. They had to rebuild my whole pectoral muscle. It was a very traumatic even for my already pained, fragile body. I ended up with full body/systemic CRPS. I have it everywhere. Taking a shower for me is like bullets pelting me and I need my husband to shelter me from the water while I try to get clean. Believe me, it’s nothing weird or kinky! It’s the only way I can keep my body somewhat clean now days. I have been on the same dosage of meds for a very long time now. I never ask for more and on my “bad days” I just stay in and don’t do anything much at all. But please don’t take that away from me because I’ll never be able to do anything at all, not even will I have my 2 hours daily, if they try to stop everything and take it all away even from the responsible ones who do exactly as they are asked.

One Physician wrote in the Pain Network News, that he has had patients on higher doses of Opioids for over 20 years and they have some semblance of a life. He even agrees that taking these meds from us and these other people like us who’ve been on long term dosages and who will most likely have to stay on them for their lifetime; is cruel and inhumane treatment! He said that they are “forcing us into suffering, sickness and possibly even death!” All because a group of “people” decided that my medicine and these other people’s medicines are suddenly claiming the lives of “too many”  and stating that our pain medications are “dangerous”. Well, they are not if they are prescribed by the right Dr and maintained by the right Dr. and as long as the patient follows all of the rules and does what is right and good!

They tried to also scream “HYPERALGESIA” to everyone on Opioids for any length of time! If it is working and has been, then how can it be “Hyperalgesia”? If they really think that Hyperalgesia exists and is a problem with high or low dose Opioids, then this one Dr. who did not give his name, said that “we must remove all intrathecal Opioid pumps because these devices deliver a MEQ directly to the CNS receptors that is far in excess of any dosage we can achieve by peripheral administration.”(Painnewsnetwork.org)

Please use your voice and be heard! Help yourselves, help your sisters, mothers, fathers and brothers. Please lets everyone who’s suffering with long term chronic horrible debilitating pain, take a stand and rally around one another. We need to form advocacy groups that will work together for the common good! Not “my group” and “your group” but we need an “our group” that will help us and speak up for us and with us and take a stand against all of the knuckleheads who just want to make a profit and don’t care if we live a fuller or lesser life. They don’t even care if we actually live or die because if we are no longer a “productive member of society” in the eyes of our government, CDC, FDA and the others, then we will not be heard nor will get the help that we deserve. Please write to your State representatives, and to our Federal agencies, House of representatives….anyone who will hear us and not just let it be words to the wind! Please let us stick together and not allow ourselves to be treated so hurtfully and inhumanely for no common good whatsoever. But only for the lies!

Thank you for reading…if you need me to find a place for you to write, or if you want more information, please ask me in the comments. I want to take a stand and really help to do something about this awful mess. It’s just not right because I just know that they would never take Coumadin or Warfarin (blood thinners) from someone like me with Atrial fibrillation. They wouldn’t take Insulin from a Diabetic either. Then don’t let them take pain medications from legitimate long term chronic pain sufferers. Please don’t be quiet! Let’s help each other and let’s take a stand against this bad situation; this life altering and life taking situation!

To me and many other pain advocates and pain patients alike, it feels like this “war on Opioids” is not for us, but against us! Many people who have health insurance now and especially Obamacare, have very high deductibles in the $5,000.00 range! That is crazy ludicrous! They cannot afford the treatments or the medications. What can we do? We have the FDA and the DEA and the CDC all trying to make it seem as though all pain patients are criminals as well as all Dr’s prescribing any pain meds are also criminals or “drug dealers”.  Do you know that I read someplace, and I cannot think of where it was at this moment, but when I do find it, I will mark it down here; but less than 5% of Opioid taking patients are “addicted”. We may be “dependent” but we are not “addicted” to the pain meds. They don’t make us “happy” or ‘high”; they merely lessen our pain so we can have some kind of small life outside of our pain. The dept. of justice and all of these places are targeting our pain management Dr’s and making them jump through hoops to help us at all. Therefore comes the pushing to get the surgeries for the pumps and the stimulators, so they don’t have to “deal with” the medications or the Feds! It’s not fair to intrude, or better said, “invade” our bodies with metal and cords and electricity etc. Giving us more “scars” and more pain flares and more infections to worry about. Leave us alone and go after the real criminals, please won’t you? #waronpainpatients #painedlivesmatter

675C1E45-C679-4D67-BC7D-4336D5986C1802731E4D-97C9-49E4-93A5-E0A97E5AE670