Testimony From A Pain Patient, Re: Suboxone And Bupenorphrine


This is an email that I received from a chronic pain patient, Chuck Malinowski. He wanted to let me know about his experience with Suboxone/Bupenorphrine. He asked me to share it, after he had read my 2-3 articles about these harsh drugs that are being forced upon chronic pain patients at this time. The side effects from these partial opioid agonists, are much worse than our average opioids. While their analgesic effects are very low. They don’t do much in lowering the high impact pain that many people with long term, painful chronic illnesses live with. They have, however been proven to take the edge off of some lower pain illnesses in drug addicts who have to take it bcz they are unable to take “regular” opioids. The data suggests that it only really helps a little bit with addicts who need a bit of pain relief.

All of my research is backed up and linked to articles and research. Some is straight from the manufacturer of Suboxone/Bupenorphrine:

1) Regarding Bupenorphrine & Suboxone

3) About Suboxone, Bupenorphrine & Naloxone

4). More About Suboxone & Bupenorphrine

Here are some links to more articles where I researched information and came to these conclusions:

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

(*This is where I got some of this information):

1. https://www..com/suboxone-creators-shocking-scheme-to-profit-off-of-heroin-addicts

2. https://www.drugs.com/suboxone.html

Articles that Explain The Bad effects of suboxone, bupenorphrine etc.

1.  Why Suboxone Treatment Can Be Harmful

2. The Suboxone Conspiracy

3. the ugly truth about suboxone withdrawals

***Below is an article straight from a patient:

Here is one Testimonial:

“Absolutely do not let your doctor put you on buprenorphine.
DO. NOT. DO. IT.
Unless it is an absolute life-threatening medical emergency, do not ever allow anyone to put you on either buprenorphine or Suboxone, which is a medication made with buprenorphine and even worse, and much more expensive.
Buprenorphine causes such a severe, and rapid physical dependency that after only using a comparatively small dosage, 16mg per day, for a single month it will take you a minimum of four, but probably five or six months of absolute hell to get off of.
This is not a medical opinion, or medical advice, this is the reality of what I am now living with, and have been for more than 10 weeks.
I was put on buprenorphine when my implanted pain pump ran out of morphine sulfate and I went into severe acute opiate withdrawal.
It was basically an emergency situation, the level of medication for my pain pump was the oral equivalent of 160mg of morphine a day, it was severe opiate withdrawal.
I did not have an addiction to opiates because this was intrathecal morphine – intrathecal delivery is when the medication is delivered in liquid form directly into your spinal column – but my body had a tremendous physical dependency.
Even so, I seriously regret being put on buprenorphine even if it was on emergency basis.
I was on 16mg of buprenorphine per day for five weeks after getting out of the hospital following treatment for severe acute opiate withdrawal.
The treatment was being put on Suboxone, later changed to just straight buprenorphine.
Within three weeks I started experiencing severe migraine headaches, ear aches, severe abdominal pains, diarrhea, severe sleep disturbances in the form of horrific nightmares – nightmares so bad I was afraid to go to sleep.
I also experienced drastic changes in body temperature, one minute I felt like I was roasting alive, the next minute I felt like I was freezing, sometimes I felt both at the same time.
I have been trying to get off of buprenorphine for 10 1/2 weeks now. I have been using every trick in the book to manage the horrible withdrawal symptoms. Herbal supplements, herbal teas, detox supplements, vitamins, OTC medications, etc.
And the withdrawal symptoms are truly horrible, even when simply reducing your dosage by 25%. It’s just as hard to cut your dosage from 5 mg a day to 4 mg a day as it is to cut your dosage from 16mg a day to 12mg a day.
This means that the closer you get to 0mg a day the harder it is to reduce your dosage, because you have to keep doing it by a relatively small percentage, 20 or 25% day over a period of two or three weeks.
It is so bad it gets to a point where you have to cut from 2mg per day, to 1mg per day – if you can even tolerate that big a cut at that point – to 1/2 mg per day, to 1/4 mg per day, to 1/8 of a milligram per day – and, according to my doctor, it can take weeks to do it. It took me 3 1/2 weeks of working at reducing my dosage from 6mg a day to 4mg a day before I could tolerate 4mg a day. It was extremely difficult, and painful every step of the way, and even so, I am suffering horribly.
Today is day number seven at 4mg a day. The last week has been unimaginably horrible – the entire process is unimaginably horrible – today is horrible, and I expect that I will feel like this for another week or two before I am stable at 4mg a day. 
Once I am stable – comfortable – at 4 mg a day I can try to start cutting my dosage to 3mg a day, and the entire nightmare process described below starts all over again, although in truth it never really stops it only gets less horrible, until you try and make your next dosage reduction.
At times feeling like I am burning alive, I feel like I am on fire inside and out. I frequently feel like somebody has put some horrible mind-bending drugs in my drinking water. Uncontrollable shakes and tremors. Uncontrollable whole body spasms were every muscle in my body suddenly goes completely rigid. Diarrhea. Severe sleep disturbances from absolutely horrible nightmares – my neuropsychologist tells me that nightmares are very common with buprenorphine. And you only have the nightmares if you’re lucky enough to be able to sleep in the first place. Or if you can even stay asleep because you’re going through such drastic changes in body temperature that you are frequently waking up and turning the fan on, or turning the fan off, or getting rid of the blanket, or pulling the blanket back on. 
Or, if you try and reduce your dosage a little too much, a little too quickly you wake up drenched in sweat with your clothes soaked through.
If you try and reduce your dosage a little too much, a little too quickly all of the above mentioned withdrawal symptoms are magnified several times over and it literally becomes a living hell. It can be as bad as full-blown acute opiate withdrawal from a high level of opiates. These are both things that I have lived through, so I know this from personal experience. 
Simply trying to get off of buprenorphine by slowly reducing my dosage over the last 10 1/2 weeks at a time has unquestionably been the single most difficult, painful and horrific experience of my life, aside from more than 10 years of Reflex Sympathetic Dystrophy.
I have advanced Reflex Sympathetic Dystrophy, also known as Chronic Regional Pain Syndrome. RSD/CRPS – as well as Trigeminal Neuralgia – has been called the most painful condition there is, it is also sometimes referred to as  ‘The Suicide Disease,” so when I say that getting off of buprenorphine is the most horrible and painful thing I have ever experienced that really means something.
I’ve already I’ve been weaning myself off buprenorphine for 10 1/2 weeks and I still have another 12 or 16 weeks to go – if I’m lucky. It may take even longer. And from what I have read, even once I have stopped taking buprenorphine completely, I can expect another month or two of significant withdrawal symptoms in the form of depression, anxiety, lethargy etc.
It is my personal opinion, based on more than 15 weeks of personal experience of being on buprenorphine, and 10 1/2 indescribably horrible weeks of trying to get off of buprenorphine, that this is a horrible medication, and for a chronic pain patient to use it as an alternative to opiates is a horrible mistake.
It is my personal opinion, based on personal experience, that putting chronic pain patients on either buprenorphine or Suboxone and telling them that it is a safe and effective alternative to opiates is a horrible scam.
It is my personal opinion, based on personal experience, that putting chronic pain patients on either buprenorphine or Suboxone and telling them that it is a safe and effective alternative to opiates is not only medically irresponsible, it is an outright lie.
Getting off of 40mg of hydrocodone per day after six months took two weeks and was no more unpleasant than a mild case of the flu.
With buprenorphine, it took 3 1/2 weeks to simply reduce my dosage from 6mg a day to 4mg a day and it was freaking horrible. I am still having extremely unpleasant withdrawal symptoms after being on 4mg a day for a week, and I expect this will continue for at least another week before I am stable.
STAY. THE. HELL. AWAY. FROM. BUPRENORPHINE.

Chuck Malinowski

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

Indivior Inc. Indicted for Fraudulently Marketing Prescription Opioid | USAO-WDVA | Department of Justice


Hello Friends!

I found this article not too long ago. I thought you might want to read it if you are a high impact chronic psin patient or anyone living with psin on a daily basis.

Indivior Inc. Indicted for Fraudulently Marketing Prescription Opioid | USAO-WDVA | Department of Justice
— Read on www.justice.gov/usao-wdva/pr/indivior-inc-indicted-fraudulently-marketing-prescription-opioid

The True Motivation Behind the Opioid Crisis-Profit off PDMPs and Profiling, Private Data Theft


Hello Luvs!

I just wanted to bring your attention to this insightful article. If one stops to persue the state laws on the books regarding PDMPs (prescription drug monitoring programs), there is an abundance of fascinating language buried in our very own state statutes. These…
— Read on medium.com/@heatherzamm/the-true-motivation-behind-the-opioid-crisis-profit-off-pdmps-and-profiling-private-data-theft-4b0ffb10e9d3

Update On Upcoming Skull-Neuro-Ear Surgery


Hello Everyone !

Above is a 37 second update from my appointment today 6-10-19. Thank you for the outpouring of love ❤️ and support! You’re the Best followers/fans/friends ever!!

**ADDENDUM: SURGERY WILL BE JULY 26, 2019** they scheduled it today…. JUST WANTED TO UPDATE YOU ALL… sending peace, hope, love & Light…

Feel free to email me: tearsoftruth@yahoo.com

Love ❤️

Suzy

Heres my Instagram post today too:
So I saw the Skull base/neuro/Ear surgeon today. I will be having the tumor removed soon. I will have a Tympanoplasty(they’ll reconstruct my eardrum using a “disc” made from cartledge & Skull fascia. This is to prevent this from returning. The 3 little bones needed for hearing are diseased. I’ll be getting possibly prosthetic bones? Also I’ll be having a “Mastoidectomy”! Removal of the diseased part of the mastoid bone. It may make my HOH/ “hearing”worse or same but must do this because if it gets into the brain it can kill me! It’s really scary! Many times people hear nothing afterwards, many times people get extreme dry mouth from damage to salivary glands during surgery. Many people get worse “white noise” or pulsating in ear after surgery. Many people get a strange taste for months or forever. They try to not injure the facial nerves by doing EMG during entire surgery, but it can happen… I’m honestly not scared of the white noise or pulsating or worse/same HoH —but I’m frightened of the brain surgery part. They say they’ll be conservative with my hair being cut but still a 2 finger radius around my ear will be cut… just wanted to update everyone. It will be in 2 months because it’s very slow growing tumor and may have been there my whole life?? But it takes time to get the 4 Drs clearances that I need and also his schedule is booked until then. Now I’m happy to have my Summer but still scared because I now have too much time to be thinking about it all!

A Letter To Our Leaders, Regarding The Pain Crisis


I have copied and posted below, this 2nd & 3rd letters that I’ve now sent to our President and several other politicians/legislators. If you have someone else that you’d like to send this to, please feel free to copy & paste my letter and send it to any legislators.

Here’s a list of recipients so far:

  • President Donald J. Trump, 1600 Pennsylvania NW, Washington DC 20500
  • Michigan Senators Debbie Stabinaw & Gary Peters:
  • 1: senator@stabinaw.senate.gov
  •  Senator Gary Peters  C/O Patrick V. McNamara Federal Building, 477 Michigan Avenue, Suite #1837, Detroit, MI 48226

**my US state of Michigan representative Hailey Stephens: Washington, DC Office   

**my US State of Michigan representative District #20:

***mailto:MattKoleszar@house.mi.gov

Dear Mr. President,

I represent only one out of 100 million people in the chronic pain community. Out of that number, there are an estimated 26 million of us who urgently need your help.  Many people in the United States of America are  dealing with horrific pain on a daily basis.  I stand along with them  & implore you to help put an end to the violation of human rights that is taking place. 

The CDC, DEA and “Big Brother” Pharma companies are “hurting” the American chronic pain Community. We are losing access to medically necessary medications that enable us to live some semblance of a life. 

We are and have been losing access to our pain relieving medications since the implementation of 2016 CDC Guidelines.  Those guidelines were written by addiction experts and there was not one Pain management Dr. present. They were also written in secret, behind closed doors by a group of people who know nothing about high impact, ongoing, chronic, painful illnesses.

A Dr. should not be afraid to prescribe Opioid pain medications to their patients because of repercussions from the CDC or DEA. But our pain Physicians are leaving in droves because of them & the 2016 CDC Guidelines. 

The  “Opioid epidemic” is about illegal/illicit fentanyl brought here from Mexico & China. It’s not about us, the 100 million chronic pain patients in the USA. Only 1% of legitimate chronic pain patients who are legitimately prescribed opioids, for high amounts of pain, ever become addicted. It’s as though our country is now torturing and punishing people for being ill.

Mr. President, we are not addicts and we are not “addicted”.  A person can be “dependent” on a medication and not be addicted! They are two very different situations. We are not addicted to our medications and we do not get cravings nor do we get “high” from them. An addict seeks out their “drug of choice” at any cost.  They look forward to taking them because of the “high” they get. A legitimate chronic pain patient who’s done well for years on a stable dose of opioid pain medication, doesn’t get any sort of “high”.  We also take our medications responsibly.  We get some relief and reprieve from the daily chronic pain that we live with. 

Please help us get back the physician / patient relationship, without interference from Pharmacy’s, insurers, the government and politics.  Please help us to keep our Drs in charge. It should be the decision between patient/physician to choose what is necessary and best for our pain control. They went to medical school and the government did not.

Many pain management Dr’s are leaving the practices they’ve built and the profession they’ve worked hard at, to achieve. They’re  afraid because they are being wrongly targeted by the DEA . They aren’t free to prescribe medications that help to relieve pain anymore. 

People in the USA in 2019 are being tortured and hurt by this on a daily basis. Just yesterday, I read the story of a 94-year-old woman who shattered her kneecap and was taken to the hospital emergency room. They immobilized her knee and sent her home without any pain control at all. Can you even imagine shattering your kneecap and not getting any thing to help with a torturous pain like that?
Mr. President, please help us? I understand there are people who die from overdoses. But they are a totally separate group of people who need a different kind of help. It shouldn’t be at the expense of an entire separate community of citizens. People In pain are being taken off of their Opioid pain medication during one visit to the Dr’s office. Often it’s a Dr. that they’ve gone to for years and they’d been living some semblance of a life while on a regimen of medication for pain control. But because of “fear”, Dr’s are taking away the little bit of life that some of us have left. 

I also don’t believe that anyone should be FORCED to have an invasive surgery in their spine or anywhere for that matter; when an inexpensive & safe pill, with little side effects can help so much. 

I implore you to help the estimated 26 million chronic pain patients in the USA, who are “dependent” on opioids for pain control & who are diligent and take these medications responsibly. Help us to get back the freedom of choice. Get us back to the pain management medication regimens that are life sustaining for us with more tolerable pain levels.

Please read my letter and talk to me if you’d like. We need you to understand that we are “chronic pain patients” and not “addicts”! We are just real people living with unfortunate circumstances & high pain illnesses. Please help us to receive the medications that give us some semblance of a life for ourselves & our families.

Sincerely,

Suzanne B. Stewart
Recipient of U.S. Pain Ambassador of the Year Award‘16, Mentor @RSDSA, freelance writer, Blogger/Blog “Tears Of Truth” @tearsoftruth.com, Patient leader WEGO Health, HoH/ASL, Director of communications for Deaf/HoH for CIAAG, patient advocate for Deaf/HoH

About Suboxone, Buprenorphine and Naloxone


The current Opioid Hysteria was started several years ago with a rippling effect and has become worse over time. A company that has much to gain from this hysteria around opioids is called Reckitt Benckiser. According to this article in “The Daily Beast” from 10-05-16 : https://www.thedailybeast.com/suboxone-creators-shocking-scheme-to-profit-off-of-heroin-addicts , the company was about to lose their patent and came up with a “fake opioid hysteria”.  According to this article, “Reckitt Benckiser sought to exploit the nationwide hysteria over the increasing use of opioids to line its own pockets by blocking competition….”.

The drug Suboxone has a Generic name of buprenorphine and naloxone (oral/sublingual). If you visit https://www.drugs.com/suboxone.html you will notice that Bupenorphine is  also considered an “opioid medication, sometimes called a narcotic”.  Naloxone “blocks the effects of opioid medications”. Naloxone also blocks any pain relief or feelings of well-being, according to this article. The drug, “Suboxone is used to treat narcotic (opiate) addiction”. Suboxone is not to be used for any kind of pain relief or as a pain relieving medication. What I don’t understand are the warnings on Suboxone and these medications associated with it in generic form. The same warning is used on the label as is used for many opioids. The warnings state that if you used Suboxone, Bupenorphrine  and/or Naloxone it may be “habit-forming” and can cause addiction, overdose or even death. The company Reckitt Benckiser is trying to get rid of all other opioids so that they can profit off of having a monopoly on their own medications. They claim that all chronic pain patients are suffering from “opioid use disorder” or addiction, in other items that I have read.  Other warnings on the labels of these 3 drugs, state that  some other medications, if taken simultaneously with Suboxone, Bupenorphrine and/or Naloxone, can cause a serious medical crisis called “Serotonin syndrome”. They state that you should be warned and inform your Dr. If you take any herbal supplements, depression medications (*or if. You have any mental illness), Parkinson’s disease, migraines, serious infections or any medication that helps stop nausea/vomiting. The label states that these medications can cause “life threatening withdrawal symptoms”. Some of the side effects are: weak/shallow breathing, confusion, weakness, blurred vision, slurred speech, liver problems, low cortisol levels (nausea, vomiting, loss of appetite etc).  One of the most interesting side effects listed are “opioid withdrawal symptoms” (shivering, increased sweating, runny nose, watery eyes, muscle pain and diarrhea). Tell me again, why this medicine is “better” for chronic pain patients to take than long acting or really any opioids? How are these side effects and warnings any better? Also, as long as a chronic pain patient has been doing well on long term opioid therapy, why switch to something that could be potentially harmful or cause them death? Also, women or men who are still thinking about having or starting a family, do you know that Suboxone can cause infertility (*this article states that long term opioid use can also cause infertility?).  Many other medications will affect Suboxone, such as Benzodiazephines, other narcotic medications & cough medicine. It states that Suboxone is used to treat drug/opioid addiction. It does not say that it is for chronic pain in any way, shape or form.

Don’t let anyone tell you that buprenorphine is “different from suboxone” because from my research it is just a generic form of that drug. It is an opioid but has not yet been approved for use with chronic pain. Dr’s are required to take an 8 hour class in order to prescribe these drugs to patients. They are supposed to be prescribed for addiction and/or substance use disorder. The latter is what our friend, Andrew Kolodny has labeled all chronic pain patients who use opioid therapy, as having. When I looked up the classes online, that physicians, nurse practitioners etc. are required to take in order to prescribe the drug “buprenorphine”; it states this is a  medication for addiction and opioid use disorder. Physicians must apply for a waiver to prescribe bupreorpnine to their patients with opioid use disorders.

I noticed an article last week that was discussing suboxone, that it is only approved for addiction. The active ingredient in this drug is Called buprenorphine, which is known as an “opioid partial agonist”. This just means that it interacts with the same receptors in the brain, as heroin and oxycodone. The difference they explain, is that people don’t get a “high” or “cravings” for buprenorphine. But then why can’t chronic pain patients who have been doing well on opioid therapy for several or many years be left to the opioid medications that they may have been doing well on for many years? Patients who have been on a steady dose of opioids for possibly multiple chronic pain conditions, do not get cravings or high either? Why introduce these chronically ill people to something new, something else that will cause them new and or worse bad reactions/side effects?  I found in this article (www.crchealth.com/addiction/heroin-addiction-treatment/heroin-detox/buprenorphine-suboxone-vs/) that suboxone  contains buprenorphrine and naloxone. The naloxone keeps people from abusing the drug. It is an opiate antagonist. But why would anyone give these meds to chronic pain patients who do not use the opioids for any other reason than to have some semblance of a life with lesser pain levels? It states right in this last article above, that “If you take suboxone as directed…..the buprenorphrine will travel to the brain and you will feel relief from withdrawal symptoms. Chronic pain patients should not have to go through withdrawal symptoms. This is what I’m trying to get through to persons who are “pushing” these drugs on the chronic pain population now.

In this article called “The truth about suboxone” (www.thefix.com/content/stigma-maintenance-treatment9216), Maia Szalavitz discusses maintenance therapy for addiction with suboxone, Methadone or Naltrexone. She explains something that I’ve found from my research as well, to be true about opioids. If they are taken in irregular time and dosage then you will get a high. But if you take them in a regular reliable schedule and dosage, then “getting high is visually impossible”. Next, I read an article about different people who had been given the “bupenorphrine isn’t suboxone” speech. They were told that it would help them with withdrawals etc. But guess what? The person who told his story first, in this article, stated that withdrawals from the buprenorphrine were much worse than anything he had expected, encountered or had been told. I read his story here: (https://www.medhelp.org/posts/Addiction-Substance-Abuse/Suboxone-Good–Bad–and-Ugly-Truth—168-days-off-SUB/show/1502381) . I have been researching these drugs.  In my humble opinion as a non-medical personnel, who has been through hell and back; trying different pain treatments and medications over the past 15 years; that I would not ever take suboxone, or buprenorphrine even if my life depended on it! I finally found something that worked to lessen the chronic pain due to several chronic pain illnesses; I agreed to take it after being pressured “to trust them”(doctors). But now only to have it taken away 15 years later because of some crazy opioid hysteria going on so that “he who shall not be named” can become more rich and have a monopoly on suboxone, bupenorphrine etc. by “getting rid of all opioids”.

We live in America and we should be free to have choices as to what medications we want to take, knowing the risks and benefits. Just as we have freedom of speech, freedom to bear arms and now even freedom to have gender neutral restrooms! We deserve the right to have freedom to choose with our own personal physicians who are trained in pain management etc; the right to take the best medications for our own personal situations. The government needs to step away and stop trying to politicize this opioid hysteria. Stop trying to demonize the organizations that support our freedoms of treatment options! This has turned into a deadly nightmare for many of us and now myself included.

***P.S.

I also want to inform you that each time I tried to look up or research “buprenorphrine” it came up as “suboxone”. Buprenorphrine is a generic form of suboxone. In addition, naloxone is the ingredient that immediately makes you go through withdrawals if you do take another opioid/narcotic while taking suboxone. Hmmm….suppose you were in a car accident, maybe like the one that started all of your chronic pain in the first place? Suppose the EMT’s or an ER Doctor gave you an opioid to help with burn trauma or gunshot trauma wounds or horrible car accident trauma? You would be really “in trouble” would you not? Anyways, just another informative message from me to you. I hope this helps someone. Sending Love and low pain your way.

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

This is where I got some of this information:

1. https://www..com/suboxone-creators-shocking-scheme-to-profit-off-of-heroin-addicts

2. https://www.drugs.com/suboxone.html

Articles that Explain The Bad effects of suboxone, bupenorphrine etc.

1.  Why Suboxone Treatment Can Be Harmful

2. The Suboxone Conspiracy

3. the ugly truth about suboxone withdrawals

*****Several of the articles used in this blog post were provided to me by my colleague & friend, Jonelle Elgaway *** please visit her website at: CAW Nation

The “O” Word


Hello Luvs,

I have just uploaded a video to my advocacy YouTube channel. I have called it “The “O” Word (The Opioid Issue)”,  It explains a lot about Chronic pain and the issue involving Opoids for the relief of chronic pain. After a pain patient has tried a good number of treatments and they have not worked out, then a patient should be able to make the choice WITH their pain management physician, to either take Opioids or not.  This would be in order to give them some semblence of a life outside of their bed or recliner.  The video is right here, below.  My YouTube Advocacy/Awareness channel is located at: http://www.youtube.com/Suzydukettes.

I don’t want to give too much away, but here is the video:

The “O” Word- The Opioid Issue