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

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

Justice Served? What’s your opinion?


Here’s a link to Pat Anson’s recent article regarding the sentencing of former CEO & President of The U.S. Pain Foundation, Paul Gileno!

What do you think? Has justice been served?

https://www.painnewsnetwork.org/stories/2019/10/29/former-ceo-of-us-pain-foundation-sentenced-to-year-in-prison

Regarding Buprenorphrine-Suboxone


Hello my friends! For this blog post you should probably grab yourself a cup of coffee and sit down to read this short story! I’m sorry that this article is more like a “short story” than a blog post! It’s twice as long as any of my normal posts would be. But this just meshed and I wanted this information available to you.

In my opinion, I would prefer no treatment than be forced to take some of these harmful/ horrific medications. By the way, I researched them and they are still not FDA approved for chronic pain patients.  In September 2018, a form of Bupenorphrine, a sublingual film, was FDA approved “for opioid use disorder. ” It was also approved for the maintenance of “opioid dependence”. But if your physician prescribes it for your chronic pain, “off label”; and you are not a patient with “Opioid use disorder” or an “Opioid abuser” then  you may possibly get a very low analgesic effect. Might as well take that Tylenol they’ve been pushing at us? It will help just about as much.  Well, you all know what I mean, right?

Here’s another thought:  Opioids, (*which are being demonized by our government now) can have a few side effects but normally they go away within a week or so after taking them. The side effects can be:

  1. Constipation
  2. Shallow breathing (but that is only if you take more than what is needed for your height/weight and medical conditions)
  3. Once in awhile you can get nausea and/or vomiting (but the nausea lasts a couple of days at the most.  I’ve not experienced vomiting from Opioids.

Here are the list of side effects for the FDA approved Bupenorphrine and Naloxone sublingual film (called Cassipa): Proof of these Side effects of this medication online

  1. oral hypoeshesia (numbness),
  2. glossodynia (burning mouth)
  3. oral mucosal erythema (inflammation of the oral mucous membrane *sores in your mouth*
  4. headache,
  5. nausea
  6. vomiting,
  7. hyperhidrosis (excessisve sweating)
  8. constipation,
  9. **SIGNS AND SYMPTOMS OF WITHDRAWAL**
  10. Insomnia
  11. **PAIN**
  12. Peripheral edema (accumualtion of fluid causing swelling in the lower limbs

**THESE PRODUCTS MAY ONLY BE PRESCRIBED BY DRUG ADDICION TREATMENT ACT (DATA)-CERTIFIED PRESCRIBERS. With this list of side effects and all of the warnings, how or why is is supposed to be OK to use, but other

***BELBUCA:  is another type of “opioid”, similar to the above, but without the Naloxone. It is also a partial antagonist. (**It is very different from the kind Opioids that most pain patients are familiar with. The opioids that we know are able to help alleviate high amounts of daily, round the clock, high impact chronic pain).

I visited the Belbuca online and their website has a bunch of videos showing people with chronic pain and how this medcation has supposedly helped them (they are paid actors most likely).  The list of effects appear to be much longer and worse, in my opinion. The list of bad effects on the majority of opioids that many chronic pain patients have safely taken for years; or even decades, appears to be much less toxic and life altering or even, threatening.  On that same page, they say that “Methadone maintenance is  helpful for people who don’t do well with buprenorphrine. But people (mainly addicts) have to visit a clinic daily to recive that treatment.”  Our favorite guy (*cough cough), Kolodny, says now that “Suboxone is a viable treatment akin to buprenorphrine.” *Also, did you know that once you take Bupenorphrine or Suboxone, you will be labeled an “addict” & no longer a chronic pain patient/warrior! See: Opioid Addiction Treatments). Kolodny ‘s trying to not only rid the USA, but the world possibly, of opioids and replace them with much more harsh opioids! Suboxone which he calls “akin to buprenophrine” has been proven to have none or a very low analgesic effect. If taken, this so called medicine, LABELS you for life as an “ADDICT”. Yes, you are labeled for life as an addict if you accept Kolodny’s “get rich scheme” & take these harsh addiction medications! They are very different from normal pain medications that most people with long term chronic pain illnesses have been doing well on, for decades! Suboxone & Bupenorphrine also have a long list of worse than horrible side effects. Why & how are these OK to give to sick people living with horrific amounts of daily pain? People who are seeking any kind of reprieve, relief from their painful existence in hell.

Please be aware of this crooked switch to these harsh addiction medications. Please understand that the cowardly physicians, who prescribe these meds, do not have the patients best interest at heart. Instead they’re lining Kolodny’s and others wallets and bank accounts.

All the while we are suffering and being lumped together with addicts (yes, they need help too. But that is their story to tell). I have testimonials a mile long from several persons who had been prescribed these harsh addiction medications & who’ve taken one form or another of Bupenorphrine or Suboxone. They said “it was the worst medication they’d ever taken and it has horrific side effects that are unrelenting & never ending. IF you dare try to go off of it, or taper down (*as you can do with the regular kinds of opioids that most patients are familiar with), those medications tend to pull you in even deeper. They’re designed to keep you addicted . They work against your body and majorly increases your pain so that you won’t stop taking it. You cannot ever go off of it “cold turkey”. If you try, then you may experience withdrawals that I’ve been told are hellish. Worse than anything I’ve ever heard about regarding opioid withdrawals.

In a future blog post, I will try to add more & organize them. I’ll let you read what others have sent to me. I have permission from several persons because they want you to know what they have had to endure; in order to save you from going through the same hellish experiences.

DISCLAIMER: *I AM STATING THAT THIS MEDICATION IS NOT GOOD FOR HELPING THE CHRONIC PAIN PATIENTS! BUT IT MAY BE A “WEAK ANALGESIC” THAT COULD HELP AN ADDICT, A DRUG ADDICT, WHO LIVES ALSO WITH CHRONIC PAIN! That’s what it’s good for!!

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

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

Without Our Consent


Hello Everyone!

First, please watch this 1 minute video….(then return to this page in order to watch the rest of these videos. They will explain what is truly happening to our most vulnerable, chronically ill and disabled pain community members):

The Link to my Video “They Are Watching”

*******************************I APOLOGIZE BUT ONLY THIS 1st VIDEO & “FIGHT FOR OUR LIVES”, IS AVAILABLE AT THE MOMENT. I WILL TRY TO MAKE THE OTHERS AVAILABLE AGAIN ASAP. *************************

I wanted to give you a “one -stop” place to get a few very informative videos regarding the pain community and the opioid hysteria. Just below is a video titled “Without Our Consent”. It is about how the pain community is being used as human subjects of a government experiment without our consent!

NOTE: **Please excuse the 2 small Captioning mistakes. I don’t hear or see well. I did the best I could do to get you the information. Most persons, whether they’re Deaf, Hard of hearing or hearing; wont mind too much if it says “vide” instead of “video” at 1:30 minutes into this video. I’m sure everyone can understand the meaning.

**Also at 3:30 minutes in, the Captioning failed to post. The information I added did not post for the CC. It’s supposed to read “by myself, I did it”….(it states “Please input message”)

I apologize for these 2 small mistakes but I do not feel well enough to redo the entire video bcz of this. Please feel free to remake this video and I’ll gladly remove this one. I thought that the chronic pain community should have this information. Then they can decide for themselves what they want to do with it. The video itself is totally fine so unless you’re deaf/hoh, you shouldn’t need the CC. I’ve written my corrections here for My Deaf/hoh community and they will forgive me for not being perfect.

**The Chronic pain community has been studied like lab rats and left to suffer needlessly all for filling the wallets of our Government bureaucrats

Link to my Video “Without Our Consent”

Next, I have this video that I made just recently. I titled it “Fight For Our Lives”. I had asked the pain community to send me videos of themselves. I wanted their stories about losing pain medications after having done very well for many years. Look carefully for a woman named “Dawn Anderson”. She submitted her story to me. She was doing well for years and then list her medications. She has just recently passed away! Dawn died writhing in pain daily! She was pleading for help! Nobody listened. But I did and I tried to help! But nobody who could truly help her, did that! She’s dead now and it is very sad because it may have been easily avoided, had she been getting pain relief. Here’s the video that I made. This is the short version of several pain patients stories . This video contains several patient advocate stories. I did my best to do the things that I’m able to do.. (VIDEO UNAVAILABLE AT THIS TIME)

Here’s the link to “Fight For Our Lives”

Next, I’ve posted here for you, the link to my video, “Pain, Politics & Suboxone”, about Suboxone & Bupenorphrine. It explains how these medications are not for chronic pain patients. These medications are for addicts and have a very low analgesic effects. (VIDEO BELOW UNAVAILABLE AT THIS TIME)

Here’s the Link to: “Pain, Politics & Suboxone”

Lastly, this video is from just after the “CNN Town Hall Meeting With Anderson Cooper”. They shut out the entire pain community and did not give our representatives a chance to speak out! The got it entirely wrong! Here you go, watch this:(VIDEO BELOW UNAVAILABLE AT THIS TIME)

Here’s the link to this last video: “Let The Chronic Pain Voices Be Heard”

I hope this list of videos helps you get as much information as possible. Please note that each video is closed captioned for my Deaf/Hard of Hearing community.

*******************************PLEASE SEE THE PHOTO OF THE PRESS RELEASE BELOW. This is where the information came from regarding the “prescription writing for opioids being at a 25 year all-time low”

Thank you so much!