Untreated: The Healthcare Crisis-A Documentary


There are several people and organizations making Documentaries about pain patients getting “left behind” in all of the opioid hysteria right now.  A few that I’ve personally taken an interest in, are awesome. I feel that some Organizations, are trying to sway the chronic pain community into thinking that the physicians who are afraid to treat them now with any opioid therapy are correct in doing so.  There are those who promote techniques such as “grounding”, massage therapy, acupuncture and mindfulness as relief for life long chronic & painful illnesses.  There is a place for some of those things. If it is the patients choice, they could be added to other type of medicinal therapies, such as CBD oil, Medical cannabis, Kratom and/or Opioids.  But alone, these “alternative pain control therapies ” don’t help to control chronic &/or intractable pain permanently.  They also won’t help much when someone is living with high amounts of chronic pain from several illnesses on a daily basis. In my opinion, they won’t help someone who had been doing well on other medication therapies for many years and who suddenly got force tapered or stopped from something that gave them some semblance of a life, for over a decade in many cases.

But there is a new documentary coming out soon and it appears to be one of the best that I’ve seen. It looks very professional and it is in no way a “home video” or a “YouTube” video. It appears to be very well done and I really thought the message was and is clear.  Get the government out of the Doctor and patient exam rooms and relationships. Give the physicians back the power to decide along WITH their patients, what method is best suited for the control of their pain. Keep Hollywood, Andrew Kolodny and Dr. Phil out of our personal medical histories and give the chronic pain community back their lives. We are not expendable just because many are unable to work. Most of us worked for many years and paid into the Social Security program and had to have enough “points” from working, in order to receive the SSDI. So we are not “leaches” nor are we taking from our Government.  Most have been very dedicated to helping in society and being a part of every day life. Many chronic pain patients are former chefs, Interpreters, Secretaries and even teachers. Give us the benefit of the doubt and stop treating us like we are unworthy or expendable.

This documentary “Untreated: The Healthcare Crisis” is directed and produced by Time Thread Studios & their production crew, alongside Lauren DeLuca and Jayne Flanders. Lauren & Jayne are the original founders of CIAAG or “Chronic Illness Advocacy and Awareness Group”. They have a support group online and run a Nonprofit for chronically ill and disabled persons living with pain.  I have donated a small amount of $25.00 to this documentary because I believe in it. If you can contribute in any way, even $5.00 would help. If many people could donate even that amount, it would really help in getting this documentary out to the public.  What is stated in this documentary is true; “What we have is an epidemic of ignorance and fear and its ruining healthcare “.  The epidemic is not an “Opioid Epidemic” but one of instilling fear and panic to the non-pain community so they won’t truly understand.  Not until they or someone that they love is living with daily chronic pain and suffering due to the under treatment of pain today in the USA and Canada.

You’ll see in the movie’s trailer, that even the CEO of Reckitt Benckiser, Rakesh Kapoor has stated that “every major deal we’ve done actually, has created good value for share holders”. They are the makers of Suboxone, Bupenorphrine etc.  If you read a couple of my other articles (About Suboxone, Bupenorphrine & Naloxone and another Regarding Bupenorphrine- Suboxone and also Pain, Politics, Suboxone & Bupenorphrine ) regarding these drugs made for addiction, not pain; I believe that you will see a trail of money leading directly from them to this fake and manufactured Opioid “crisis”. “The goal is profits”, it says in the documentary’s trailer. It is without regard to the millions of chronic pain patients.  This movie will show how the Government is trying to control this “crisis” by limiting the supply of opioids for the pain community. It is stated that 319 medications have “no competition”.  The question arises “Is the FDA dragging their feet?” Also you will see that physicians are afraid to prescribe pain medications and we all know that is true. Then there is this statement, that “the intentional removal of effective pain medications”…. from people who live with daily chronic and high pain illnesses, “that is the definition of torture”.

The link to “Kickstarter.com” and the movie trailer is listed below. You’ll notice on the Kickstarter website that they have goals and various gifts for supporting this film.

Please check out this documentary and lets truly try to get this movie out to the public via Netflix and other venues. This documentary has our hearts and our souls in it. It is, in my opinion, a really effective trailer and the documentary, I believe, will even exceed our expectations.  “The pendulum has swung much too far in the wrong direction”, is another quote from “Untreated: The Pain Crisis” movie trailer. Please help by any donation that you can spare and/or by sharing the link below and/or this article to people in your own pain communities.

Click below, to see the trailer:

Untreated: The Healthcare Crisis Movie Trailer

Making Peace With My Pain?


*********PLEASE NOTE THAT THIS IS MY ORIGINAL ARTICLE!!! WHAT GOT POSTED IN “NTL PAIN REPORT” TODAY (9-22-18), WAS EDITED AND CHANGED INTO SOMETHING ELSE. I’M NOT A WHINER NOR AM I WEAK! I HAVE A VOICE & I’M VERY STRONG!! I SENT IN SOMETHING WRITTEN FROM MY HEART & SOUL. IT’S BEEN CHANGED INTO SOMETHING UNRECOGNIZABLE! THOSE ARE NOT MY WORDS OR THOUGHTS AT ALL. THIS IS MY ORIGINAL ARTICLE AND BELOW, YOU CAN READ MY OWN THOUGHTS AND WORDS:

Hello Luvs,

In this time of uncertainty for chronic and/or intractable pain patients please stop telling us to “make peace with our pain”. Until you have walked in my shoes, do not try to dictate what is best for my situation. If you hurt your back momentarily or you have several aches and pains, then by all means, use “mindfulness”, “accept your pain” and then “make peace with it”. I don’t care what you do with it honestly, but stop telling me/us to “make peace” with now, uncontrolled chronic daily pain at a 7/8, knowing that it’s forever. My health decline has continued year after year with increasing medical issues piled on top of the old injuries; going on 16 years now.

Unless you actually live with daily intractable pain, don’t to tell me/us how to manage it. If you’re a writer, motivational speaker or a politician, stop giving advice when you don’t truly understand the nature of living with 8 chronic pain illnesses. If you have one chronic illness and “accepting the pain” or “making peace” with it works for you, then by all means, go for it!

Let me explain for those who don’t really know the person they are preaching to on social media. It’s not always Psychological, hysterical or a history of abuse that causes ongoing pain. Sometimes things just happen that cause a very strong person to live with very high pain. When that pain gets more complicated and worsens as time goes by, and it is forever; that is when acceptance, making peace with your pain, grounding and mindfulness don’t work very well.

I was a very active single mom with two young daughters. I had a career as an Interpreter for the Deaf at a major University hospital and school districts. I taught aerobics and was the jump rope team’s coach at the Elementary school. I visited different schools to share Deaf culture and American sign language. One day a man ran a red light and changed all of that for me. Afterwards, I worked very hard at 3 years in TBI rehab, 9 years of PT/OT, driver rehabilitation and speech therapy. I ended up with 2 hearing aids and prisms in my glasses for a long time. For 3 years I refused opioid medication due to the stigma or “taboo” of taking it. I did Biofeedback and the red line was “off the charts” showing that my pain was very high and I needed some other intervention. I was the woman who graduated with honors, never drank or smoked. I was not taking that medication. I worked with a pain Psychologist at a pain clinic. I had several epidural nerve blocks, trigger point injections, cortisone injections and other medications(*most either made me violently ill or I was allergic). I endured 8+ surgeries, including 2 screws and a pacemaker with a cardio messenger box next to my bed. They told me to “trust them” and take the opioid pain medication or I was going to stay in that hospital bed in my home. I finally accepted the fact that just as people with hearing loss need hearing aids and those with vision issues wear glasses and Diabetics take insulin; I needed to take pain medication to give me back my life, or some semblance of a life.

For 13 years, I’ve been as active as I can be. I don’t lay in my bed and wallow or feel sorry for myself. I have been a US Pain Ambassador, on the Board of Directors and even won “U.S. Pain Ambassador of the year 2016”. I’m a patient Leader for WEGO Health, have been on 3 different radio shows and I have been a mentor for newly Diagnosed CRPS patients. I have a popular blog and write for National Pain Report. I’ve done many fundraisers, awareness events and still currently lead several online groups while helping several non-profit groups with whatever they need help doing. I live with several high pain chronic illnesses, including: systemic/full body CRPS, EDS type 4/vascular, Chiari (with migraines), Right Long Thoracic Nerve Neuropathy, Autonomic Neuropathy, R.A., Dysautonomia/POTs, Coronary Spasms (Prinzmetal Angina), Degenerative Disc Disease with multiple herniate and bulging discs, Spinal Stenosis, Chronic erosive Gastritis, Gastroparesis, SIBO and multiple heart issues.

I’m at 25% of of what I was taking for the past 13 years. Two of my specialists wrote letters on my behalf, to my pain Dr.; explaining that with the multiple illnesses that I live with, the patch is and has been proven to be the very best thing that works for my pain. One of my specialist physicians wrote “why break what doesn’t need fixed? She’s been active and doing so well and this could land her inpatient and in declining health”. My pain Dr. said “this is Bullshit, his license is not any better than mine. If he wants you to have the patch then let him prescribe it”.

I continue to be quickly tapered against my will. I’m in my “Lazy Boy” recliner 16-18 hours every day.

This is what my “forever” is looking like now. I went from teaching aerobics, American Sign Language, being the Elementary schools’, Jump Rope Team coach and an active mother and then grandmother, to “living” in a recliner daily. I’m not focusing on the pain, in fact I’ve done everything to not focus on it. I went through 43 hours of labor and then a C-section, twice; while being sent home with Motrin 800 per my own choice. I’m not a “baby”, nor am I an “addict”. In fact I have a letter from the Pain Psychologist, stating that I “do not have an addictive personality”. So stop telling me to plant my feet (with open sores on them, by the way) into the earth to practice “grounding”. Don’t tell me to “make peace with my pain” or accept it; unless or until you have walked one full day in my shoes! If you haven’t experienced pain on these levels, then stop preaching to the choir. I, for one am getting very tired of defending myself and the rest of the pain community on the subject of opioid pain medication therapy. It does work for some of us just as Insulin helps the Diabetic to continue living.

**The Article Ed edited & changed totally & which appeared to be written by an illiterate 5th grader. Is in its entirety at the Ntl pain Report but for your convenience I’ve recopied what Ed Coghlan wrote in place of what I had sent to him:

Making Peace With Pain (by: Ed Coghlan)

Please stop telling me to make peace with my pain.

I can’t right now and haven’t been able to do for many years.

And it’s getting worse.

My health decline has continued year after year with increasing medical issues piled on top of the old injuries; going on 16 years now. If you have daily intractable pain, you know what I’m talking about.

It is not always psychological, hysterical or a history of abuse that causes ongoing pain. Sometimes you just hurt—a lot.

I was once a very active single mom with two young daughters. I had a career as an Interpreter for the Deaf at a major University hospital and school districts. I taught aerobics and was the jump rope team’s coach at the Elementary school. I visited different schools to share Deaf culture and American sign language.

Then a man ran a red light and changed my life. I have endured 8+ surgeries, including 2 screws and a pacemaker with a cardio messenger box next to my bed. They told me to “trust them” and take the opioid pain medication or I was going to stay in that hospital bed in my home. I said ok

For 13 years, I’ve been as active as I can be. I have been active with a national pain advocacy group and I contribute to the National Pain Report and have worked to advance the wants and desires of the millions of people like me—people who suffer from this cruel condition.

This “reduction” in opioid prescribing has hit me hard. I’m taking  about 25% of what I was taking for the past thirteen years. Specialists who treat me have written letters to my pain doctor explaining that with the multiple illnesses I live with, the patch is the best thing for me. My pain doctor, feeling the pressure of the CDC guideline, refused to do it.

Now I’m in a “Lazy Boy” recliner 16 hours a day because I’m being tapered against my will.

Not what I want. Not what I’ve been.

I could tell you much more, but if you’re like me, you know.

It’s not fair.

Suzanne Stewart is a chronic pain patient (and advocate) who lives in Michigan. She is a contributor to the National Pain Report.

***Lastly,

This Bio which is usually on all of my NPR articles, is missing today….. here’s what it normally says:

Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor.  She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S. Pain Foundation. The statements and opinions that she provides are her own and should not be taken as the stance, position or viewpoint of the U.S. Pain Foundation. For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth. You can follow her here: TearsofTruth.com

This was my photo + Bio on them”staff columnists” Page under the “Our Team” Tab.

This is the email I rec’d from Ed Coghlan, after I was trying to let him know how upset I was that he “gutted” my (this) article. He added words that I hadn’t written. He changed the powerful message that was in my original story; to one of weakness and whining! Needless to say, I don’t want to write for someone that would call this an “edit”. Then send me an email at 12:05 AM, saying that he was going to publish this article in the morning (6 hours later); without ever allowing me to see the “edits”! I finally asked if I could please see the final copy and about 1:00-1:30 AM, I received the skeleton of my former original article. I begged him not to post it as it was. He’d gone to bed and scheduled it to post at 6:00 am! I was getting all kinds of comments from persons who recognize my writing when they see it and when they don’t! The rest is history!

PS- Btw, he couldn’t get hold of me on Saturday because I have recently been quickly tapered against my will; from my LA/ER pain medication that I’d been taking since 2005. I was in horrible pain from the added emotional strain from my resignation from US Pain Foundation Board of Directors & from USPF. Then the very next day this happened.

My husband called Ed in my place because I’m conscientious and would never just not respond. He told my husband that “he was not comfortable talking with him”! Well he’s also my caregiver and I wasn’t able to speak at that point. It all came tumbling down!

Pain Warriors- The Movie


Hello Luvs,

I want you to really take a look at this post, please? I want you to “meet”, Tina Petrova. She is a fellow pain Warrior and a colleague of mine. She is not only a friend; but a friend/colleague in advocacy and awareness of chronic pain and people who live with chronic pain illnesses.

Honestly, Tina Petrova is an award winning film maker, a motivational speaker & chronic pain activist. This movie is about the real deal, chronic pain and everything that goes along with it! This movie has got to catch the attention of legislators and others who do not yet understand what it’s like to live with daily, unrelenting chronic pain.

“Pain Warriors- The Movie”, WILL catch the attention of anyone watching. But especially those who need to change the way they think regarding intractable pain and invisible disabilities. We need your help to donate and /or spread this crowd funding campaign. Please help to get more people involved in supporting this awesome film. The crowdfunding campaign will go through mid-September 2018.

Here’s the link to the Seed & spark crowdfunding campaign for “Pain Warriors- The Movie”!

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Link to the Trailer: Pain Warriors- The Movie

*Pain Warriors – The Movie

Needs Your Help! Please Help Support This Beautiful Project!

Inclusion Statement

Our story brings to light a deadly suppression of facts & figures. Chronic Pain does not discriminate against age, sex, or race; suicides in all groups due to under managed pain are on the rise. We are, all of us, only one car accident or one surgery away – from a life of chronic pain.

About The Project

PAIN WARRIORS ~ sets out to examine the invisible crisis of Chronic Pain in North America, and its devastating toll on society. Without proper and timely education of the masses this growing concern can and will reach a tipping point, beyond which there is no return.

Society’s lack of public information regarding Chronic Pain, has sadly forced this disease and its sufferers underground.

Not only are many denied adequate treatment , they are often looked upon by society as a whole as outcasts. We are , all of us, only one cancer or one car accident away from a life of chronic pain. As we age the numbers of chronic pain patients will only grow exponentially.

We intend to bring to light a deadly suppression of facts and figures. Without education and awareness, there can be no reform.

Compelling interviews showcase a broad cross section of pain patients, their loved ones and the doctors that treat them across North America. We share intimate, courageous and heart breaking 1st hand stories from pain patients in the trenches- the ongoing political and social issues they face and how they struggle to cope , just to get through another day.

Pain Warriors- The Movie

In recent months, several American pain specialists have been targeted by the DEA and currently face loss of license and potential incarceration, for attempting to uphold their Hipprocratic Oath and serve the U.S. pain population. The lines between “pill mills” and  legitimate doctors have become blurred and in many cases, unrecognizable to the general public and society at large.

In recent decades groups including breast cancer and aids patients have banded together formally with runs marches, rallies –  telling their stories in the press.

Doing so has garnered more ambitious and imaginative solutions to treatment and health care reform. The best hope for pain patients,  is to become more vocal and active in their own pain management.

The needed response to pain, it would appear, is to encourage patients to stand up and speak up.

PAIN WARRIORS  plans to do just that – give voice to the voiceless.  #givepainavoice  #painwarriors

Pain Warriors ~ the Movie has posted an update!

Pain Warriors shines a spotlight on Pediatric Pain ~

11 Yr. old Hunter,  battles courageously with a Chronic Pain condition, using Superheroe comic book characters – to inspire him to get up and fight yet another day. Pediatric pain is one of those growing pain conditions that is under- discussed and under- represented in the media.

Our new film Pain Warriors – seeks to identify and shine a spotlight on marginalized peoples and groups that have fallen through the cracks of both appropriate and timely healthcare and , societal compassion as a whole. In the pain community, we use the term” a slow death of compassion…” to denote societies overall shunning of chronic pain as a legitimate disease that steals lives, breaks hearts and destroys the very fabric of family life. There has been a deadly suppression of facts and figures for far too long. Pain Warriors  the movie ~ dives fearlessly into the muddy trenches,  where chronic pain patients & pain doctors who face a hostile regulatory environment live in apprehension, fear and suffering-  of what is to come next… live in fear and suffering.

Visit Pain Warriors ~ the Movie

Something Emotional


Hello Luvs,

So the things I’ve written lately, have been pretty “deep”; to say the least! I thought because you know that my Language is American Sign Language, and since things have been a bit “heavy”; I’d take it down a notch! I hope you enjoy this beautiful song about the crazy state of the world these days. Where the right and left are fighting and the chronic pain patients are losing life saving/giving pain medications. This song is called “Bleed the same” by Mandisa & with Toby Mac & Kirk Franklin. This is me signing in ASL to this beautiful song! I hope it lifts your spirits as it has mine!

https://youtu.be/aD1YKgpk5X0

Bleed the Same in ASL

Down The Rabbit hole


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I want to inform the pain community about my situation because this is happening to many chronic pain patients. I’ve been a voice in the pain community and now I too, am going “down the rabbit hole”! Before I become possibly incapacitated; I want you to know what is happening. For those like Kolodny, who believe that we should “get beyond the pill bottle”; I say, unless or until you are in my shoes and live with my experiences, stop preaching silly things like “pain acceptance”, will help. It cannot help all of my pain conditions combined. Stop acting like you are better, mightier or stronger because you might feel better from “grounding” (which is in essence, touching the earth with your feet, being “one with the ground/nature”, to make your pain lessen or disappear). The bottom of my feet are covered with open sores due to the stage of CRPS that I live with. This has become insane, while there are individual cases in where opioids are the preferred treatment and they do continue to reduce our pain.

*A bit of history if you want it: I won’t start at the very beginning because that would be much too long. I will tell you that I’ve been on SSDI since 1999 and initially for PTSD (*they said that I was the “worst case of childhood trauma/abuse they’d seen in 36 years) and kidney failure. Then I was hit by a car that ran through a red light. One minute my husband & I were sipping lemonade at an art fair.  The next minute, (as we travelled through a green light to have dinner afterwards) he was really bruised & shaken and I was unconscious & strapped to a back board, on route to the hospital. That experience is a story for another day. The entire auto insurance bullying and fear mongering was another traumatic debacle. These experiences have continued, one after another; which brings me to today and this article. 

After our accident in 2002 and upon being discharged from the hospital; I was sent to doctor after doctor. I was also sent to TBI rehabilitation, PT/OT and also to Tri-County pain clinic in MI. I was totally new at all of this & it was my first experience with this type of physical pain. Although, I have had 2 C-sections and I’ve lived through childhood, ex-spousal & other abuse throughout my entire life. At the pain clinic, I received various epidural nerve blocks, trigger point, cortisone and other injections. I also saw a Pain Psychologist, did Biofeedback and did many other types of therapies. The Pain Psychologist wrote in his report, by the way, that I “do not fit the profile for an addictive personality.” He attached me to an EMG type of machine where he can “see” your pain spiking via a red line going upward. Mine went off the charts. This was prior to my diagnosis’ of: systemic CRPS, EDS-4/vascular (aka Polyneuropathy in Collagen Vascular Disease), R.A., Dysatuonomia/POTs, Gastroparesis, S.I.B.O., Chiari and more. At that time though, I was diagnosed after the auto accident with: many physical injuries and a TBI. I went through 8 surgeries, 2 screws in my left shoulder, metal in my jaw, 2 AFO’s, prisms in my glasses, 2 hearing aids, a dual chamber pacemaker and a hospital bed in my home. I have a walker, loft-strand crutches, wheelchair, motorized scooter, leg braces and also knee, neck, hand and shoulder type of braces.

After going through all of the “hoops” at the pain clinic, I was found not to be a candidate for an SCS (spinal cord stimulator) nor a pain pump (intrathecal). I was diagnosed with CVID or “Combined Immune Deficiency” disease. They informed me that I would be sent back to my primary dr. because they could not give me the medication that I needed. In 2005, they were already saying that they could not prescribe pain medications (which they felt I needed) because they had to “stay under the radar of the DEA”. I went back to my PCP and for the next 10 years he prescribed pain medications.  Until one day in December of 2014, I arrived at my PCP’s office and was told that it was his last day working there. I received no other information and I was terrified because I did not know where to go or what to do. Dr. Bullach MD; promised me that he would personally make a call to my former pain clinic and Dr. Dobritt, my former pain physician. He also promised me that my treatment would remain the same under his partner. I returned the next month to see his partner and was condescended to, teased, put down, and told that “all of the other dr’s patients were “drug addicts”, “drug seekers” and unworthy people seeking pain medications. He promised to see me for a couple of months because he had known me “to be a good person” since my children were small. But over the next 6 months I had to put up with derogatory remarks.

Dr Bullach never did call Dr Dobritt, nor did he send any of my updated records. I found that out when I went to see him myself again. I had been a model patient; and the way I was treated when I went back to see him was horrible. He would not take me back as his patient! He told me that’ “he couldn’t see me because I was part of “Dr Bullach’s mess”! I had no idea what he was talking about!

I sought out a pain physician and found one near my home. He told me that if I could take myself off of the medication that had been prescribed to me since 2005, that he would “accept me as his patient”.  I was very ill for about 11 days and for up to 6 months, I was not feeling well aside from the pain issues. But I got through it and would not ever want my worst enemy to go through that experience. I did it with my loving husband by my side because I was not addicted to it. My mind did not care at all, but my body was dependent. When that ordeal was over, I saw my current pain dr; the one I still see today. Things had been going well and I have had some semblance of a life. He had told me that I was a “complicated patient” and that I did not have to worry about my medication being stopped.

For several days prior to these appointments, I became very apprehensive, nervous and had many of the PTSD symptoms recurring monthly. Then his attitude towards me changed from a mutual respect to him being the “Wizard with a magic wand” and Me being a peasant “needing his magic”. Thats the only metaphor I can come up with. It was bazaar. I had a routine urine drug screen test in April 2018 and he knew before I left his office that something was not “right” with it, but he failed to inform me prior to leaving. At my next appointment he informed me that I had had a positive urine test and so he sent it into a lab for more testing. It came back as a “false positive” because of the migraine medication that HE KNEW WAS PRESCRIBED to me for many years. I take very little, but he knew it was in my records; he knows that I take it.  In the end, we got stuck with a $265.00 bill for testing that I did not agree to pay for. We got stuck with this large bill for something that I did not do and would never have done. It was his mistake, not mine that he forgot the medications that I am taking and that it can show up as something else, as he explained later.

He has had an “edge” to his treatment of me since that date. I am literally ill prior to each monthly appointment. Nothing changes in 30 days anyways? Why in the world do we need to go so often? This is ridiculous.  Just as a person with diplopia or myopia needs glasses; just as a diabetic needs insulin and a depressed person needs anti-depressants; I am a chronic intractable pain patient and I need pain medications.  I’ve never done anything wrong as far as I always pick up my meds on time, I’m never late for my appointments and I’ve never been a “no-show”. But I showed up on July 9th, 2018; and was suddenly without explanation, cut down to 75% of my LA/ER pain medication. He was going to stop it abruptly that day, but I did not get hysterical. I reasoned with him, adult to adult. I reminded him of my prior heart attack, the CVA (stroke) and my complicated medical history with multiple co-morbidities. He agreed reluctantly to taper me a bit. He informed me that he was doing this to get me “psychologically ready” and that next month I would get zero.  I’m not “Psychologically addicted” so that made no sense at all, but I went with it for my own comfort and safety.  He went on to tell me that suddenly the patch is  now “only for cancer patients”, which he does not treat. He also told me that I was “not heavy enough” for the patch and “I was probably only really getting 30% of the medication”. I did not say a word as I was prescribed down from 100 mcg per hour, every 48 hours (due to hyper metabolizing), to 75 mcg every 72 hours. So not only 25% less medication, but now being stretched out a full 24 hours longer each patch. The first few days were difficult as I had a few withdrawal symptoms. But the rest of the month, I’ve had increased pain, exacerbation of my CRPS, and fatigue. Also, every 3rd day I was in bed, very ill. We all know that for especially those of us who hyper-metabolize (due to the types of pain illnesses that we have), the patch never works on the 3rd day!

I have a loving, supportive husband and my support “team” online which consists of a few people who have been there for me throughout this ordeal. I had websites, stories and ideas sent, all in an effort to help me reason with my pain dr. On 8-10-18, I showed up well prepared.  I had with me, the 2013 FDA’s response to Andrew Kolodny, when he wanted Fentanyl labelling changed for non-cancer pain. They told him this, in their 2013 letter (Docket No. FDA-2012-P-0818):  “It is FDA’s view that a patient without cancer, like a patient with cancer, may suffer from chronic pain, and PROP has not provided scientific support for why labeling should recommend different treatment for such patients.  In addition, FDA knows of no physiological or pharmacological basis upon which to differentiate the treatment of chronic pain in a cancer setting or patient from the treatment of chronic pain in the absence of cancer, and comments to the Petition docket reflect similar concerns.  FDA therefore declines to make a distinction between cancer and non-cancer chronic pain in opioid labeling”. My dr responded that “this was not about Fentanyl” and that I am educated and should be able to find out about this?

Next, I brought to his attention, a letter that I received a copy of, from a good friend of mine on LinkedIn. He had written to the CDC and asked about the horrific state of affairs within the chronic pain community. We covered his name and I showed this to my dr as well. This letter, which is directly from the CDC and dated 4-8-18, states these things:

  • chronic pain patients deserve safe and effective pain management
  • physicians should continue to use their clinical judgment and base their treatment on what they know about their patients. That includes the use of opioids if they are determined to be the best course of treatment. The Guideline does not support involuntary tapering.
  • Obtaining patient buy-in before tapering is critical to successful dose reduction.
  • The Guideline is not a rule, regulation , or law.
  • The Guideline is not intended to deny access to opioid pain medication as an option for. pain management.
  • The Guideline is a set of voluntary recommendations intended to guide primary care providers as they work in consultation with their patients to address chronic pain.
  • The Guidelines are not intended to take away physician discretion and decision-making.
  • Specifically, the Guideline includes a recommendation to taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy.

In the end, none of the information that I presented, made any difference to my pain dr.. He just kept repeating “the guidelines, the guidelines, the guidelines”. He told me that in all reality, I was not worth saving, because if I look at his waiting room, he has all of those other people to serve, who also live with pain. If he helps me, he risks losing his practice and then he would not be able to help all of them. He informed me that “everyone is looking at him the same way” and they are also “pleading with him” for their medications.  I told him that he’s told me that I am “different” and that I am a “very complicated case with multiple co-morbidities”.  I told him that I researched Michigan Law and that there are no changes in the care or plans for chronic pain, only acute pain. None of this mattered because he just looked at me, after I showed him the letter from my G.I. dr.. A letter written by him on my behalf, states that “Suzanne has been stable while she received the fentanyl patch”. It goes on to say that I have “RSD and severe Gastroparesis and this could “exacerbate the illness of a patient who was difficult to stabilize” due to Q-T prolongation, her allergies and intolerance for oral medications”. He said that “he strongly recommends that my pain management not be altered unless there is a strong medical reason.”

My pain dr looked at me and said “This is bullshit! His license is not any better than mine! If he wants you to have the fentanyl patch then let him prescribe it for you. You’re also welcome to find another dr and get a 2nd opinion. I won’t be upset if you do that, although Im not kicking you out or anything.” He repeated that “the CDC guidelines are specific for fentanyl” and there was no way in hell I was ever getting that from him ever again, an neither is anyone else; no matter what! He pretty much told me if there was an exception, I would be it, but there are no exceptions. He repeated to me that I am educated, and have access to the internet. If I do my research, I will know that what he’s saying is true. I have done a ton of research and I know that what he’s saying is not true. He is violating his Hippocratic oath “to do no harm”. Many other physicians are also doing this instead of defending the fragile people who need them during this opioid hysteria

All You Ever Wanted To Dysautonomia


Definition:

  1. Dysautonomia refers to a malfunction or disorder of the Autonomic Nervous System (ANS). This is usually involves failure of the sympathetic or parasympathetic nervous system; but it can also mean that the ANS may be overactive. Dysautonomia refers to the “involuntary” systems of the body. This can include: body temperature, blood pressure, respiratory/breathing, sleep, heart rate and more. Dysautonomia can be considered “Local” as it is in many cases of CRPS, or it can be a total Autonomic failure. Sometimes Dysautonomia is considered to be “acute” and reversible. Other times it may be chronic and progressive (as in Diabetes or Parkinson’s). A person may be diagnosed with Dysautonomia by itself, as a condition. It can also be associated with degenerative and neurological diseases. Dyauatonomia is actually an “Umbrella term” used to describe many different issues that occur due to the malfunction of the Autonomic Nervous System.Lastly, Dysautonomia is responsible for our “fight-or- flight” response. This is what gets our body ready for stressful situations. When the nerves of the ANS are damaged, you can get Autonomic Neuropathy as well. These dysfunctions can range from mild to life threatening.
  2. What People Are Saying: people are saying that Dysautonomia is a common ailment among people with autoimmune illnesses, CRPS, Chiari, Ehler’s Danlos Syndrome (EDS) and even Diabetes. The most common symptoms that people in the chronic pain community speak about is a fall in blood pressure during standing or “Orthostatic Hypertension” or a rapid pulse rate. Other things that are said about Dysautonomia are that it causes abnormal sweating, emotional instability and motor incoordination.
  3. Symptoms: Some symptoms of Dysautonomia *(aka Autonomic nerve disorders) are: syncope (fainting), Orthostatic Hypotension and/or intolerance, POTS (Postural Orthostatic Tachycardia Syndrome), Gastroparesis, Intestinal Dysmotility, constipation, Erectile daysfunction and neurogenic bladder. Other symptoms include: fatigue, light-headedness, weakness and cognitive impairment. In Dysautonomia involving the Gastrointestinal tract, the patients often feels nausea, bloating, vomiting and abdominal pain, when the ANS malfunctions.
  4. Possible comorbidities: Possible illnesses that go along with Dysautonomia can include: CRPS, EDS, Chiari, Gastroparesis, Autoimmune illnesses, Lupus, POTS, NCS (Neurocardiogenic Syncope). Other co-morbidities include: Multiple Sclerosis, RA (Rheumatoid Arthritis), Celiac Disease, Autonomic Neuropathy & Sjogren’s Syndrome etc. The worst form of Dysautonomia, which is a fatal form that occurs in adults ages 40 and up, is called MSA. This means, “Multiple System Atrophy”. It is similar to Parkin-son’s disease but MSA patients become fully bedridden wishing 2 years of diagnosis. But please note that this is very, very rare and only about 350,000 people have the MSA form, worldwide.
  5. Treatment options: There is no cure currently for Dysautonomia at this time but secondary forms can improve with treatments for the underlying disease. You can help the Orthostatic hypotension by elevating the head of the bed, rapid water infusion (given rapidly in an IV) and eating a higher salt diet. Other treatments may include exercise and healthy diet.
  6. FDA approved medications: Midodrine is an FDA approved medication that helps with the syncope and collapse.
  1. Complimentary Therapies: Biofeedback and exercise with the right amount of salt may help some of the symptoms of Dysautonomia. Biofeedback can teach you how to calm yourself of anxiety which often comes with this illness. There was a Webinar back in early Winter 2017, that US Pain hosted. It was about “Earthing” or “Grounding (”http://forums.phoenixrising.me/index.php?threads%2Fi-think-earthing-cured-my-dysautonomia-pots.24992%2F and this therapy has been known to help this person; who wrote her experiences about “Grounding” helping her symptoms of Dysautonomia. *I was also prescribed a “cooling vest” to help with the feeling of overheating inside of my body
  2. Best nutrition: higher salt intake and staying hydrated are the two most important things to remember with Dysautonomia and nutrition.
  3. Best exercise regime: Exercise can be difficult when you feel very fatigued and barely able to stand at times. Also, you need to get the permission of your Physicians before starting any exercise program. Also, staying hydrated while increasing aerobic exercise, lower extremity strengthening, increasing fluid/salt intake and psychophysiologic training for management of pain and anxiety, along with family education. People also say that exercise intolerance is part of Dysautonomia but it is essential to helping with it. Start off slowly and avoid exercises that cause orthostatic stress. This includes minimal or no vertical movement, including rowing, recumbent biking or swimming.
  1. . Local Support groups: Local support groups can be found at the website: “Dysautonomia International”, here: Dysautonomia International and you may email Dysautonomia International at: info@dysautonomia for online support group resources. They do not verify the accuracy of information posted in the groups*.
  2. . Links to other organizations and websites and additional info: The best website with a lot of information here: ( Dysautonomia International ) at “Dysautonomia International”. They have links to support groups and online support, as well as diet and exercise tips.
  3. : Personal story for someone to connect with: Dysautonomia is something that I was likely born with. I was involved and injured in two automobile accidents that have inevitably made it much worse. First in 1983, I was hit by a drunk driver while sitting at a red stop light. Secondly, in 2002, a man in a pickup truck, ran through a red light and I suffered multiple injuries and had many surgeries. I also suffered an MTBI or “MildTraumatic Brain Injury”. One of my treatment team of Dr.’s is a Neurocardiologist, and he told me that my Dysautonomia was made much worse due to the “sloshing” of my cerebellum against the skull wall. I do have severe systemic CRPS, Chiari, RA, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (aka EDS type 4/vascular) and Gastroparesis. These are all hallmarks of the umbrella illness of Dysautonomia. Following the auto accident in 2002, I was fainting quite often. We found out that my brain was not telling my heart what to do, because I have Autonomic Nervous System Failure. I ended up requiring a dual changer pacemaker. It now does 87% of the work for my heart. I am very lucky to have found a wonderful specialist in Dr. Blair Grubb, MD at the University of Toledo Medical Center. He is known around the world as far away as the UK!

**Various other personal stories for me are found here at my blog “Tears of Truth” and at: tearsoftruth.com:

A). Dysautonomia/POTS & S.I.B.O. and this one: Article about Dysautonomia/POTS & SIBO

B). Another article for you!Https://Wordpress.com/post/tearsoftruth.com/9263

Helpful YouTube Videos:

A. Dysautonomia/POTS

B.Dr Blair Grubb on POTs

***Informational Sources:

1. Dictionary.com on Dysautonomia

2. Medical News Today in Dysautonomia

3. Dysautonomia International

4. http://forums.phoenixrising.me/index.php?threads%2Fi-think-earthing-cured-my-dysautonomia-pots.24992%2F

5. Dysautonomia International more on Dysautonomia

6. Mayo Clinic on Dysautonomia

7. Healthline.com on Dysautonomia

8. Clevland Clinic on Dysautonomia

9.WordPress blog “Tears of Truth” on Dysautonomias

More About Bupenorphrine – Suboxone


This information is “straight from the horses mouth”…please read this chronic pain patients horrific experience (he wrote this after reading my last blog post in one of my support groups):

Absolutely, I mean absolutely do not ever let anyone put you on Suboxone or buprenorphine – the primary component of Suboxone – when they try and shove you off of opiates because the stuff is absolute poison.

When my pain pump ran out of morphine sulfate after I lost my pain management doctor, thanks to the new CDC guidelines, I went into acute opiate withdrawal and ended up in the hospital. In the hospital they were supposed to detox me from opiates, they did not. Instead they pulled a really shitty bait and switch, and put me on Suboxone. Suboxone is extremely addictive and 10 times harder to get off of than conventional opiates, and much, much uglier.

I know this from personal experience. Getting off of Suboxone or buprenorphine – its active component – is an absolute nightmare.

For example: I can take 15 mg of hydrocodone – hydrocodone is the opiate in medications like Vicodin and Norco – per day for six months solid and I can just stop taking it, cold turkey, and I’ll feel kinda crappy for three or four days, I’m off of it, end of story.

After a single month of taking 16 mg of Suboxone per day, I have now been trying to wean myself off of it for nine weeks, every step of the way has been absolute hell, and it will take me at least another 2 to 3, possibly even four months to wean myself off of it. And then, I understand, I can expect to spend another couple of months feeling significant withdrawal symptoms even after I have stopped taking Suboxone/buprenorphine.

This has got to be one of the worst medical scams ever. I would compare using Suboxone to get people off of opiates to using whiskey to get people to stop drinking beer.

Suboxone is also hideously expensive $370, for a 30 day supply.

A 30 day supply of four Norco 10/325 per day is only $33.

If you get just straight buprenorphine – the active component of Suboxone – you can get it for about $90 for a 30 day supply.

The cost is actually the least of the worries where Suboxone/buprenorphine is concerned. If you are a longtime junkie who was been sticking a needle in your arm for years Suboxone may make it easier for you to get off the needle.

If you are a chronic pain patient who has been taking opiates for your chronic pain and they are going to cut you off of your opiates, you are far better off going cold turkey – hopefully your doctors will allow you to wean off of the opiates – and skipping the Suboxone/buprenorphine hoax because getting off of it is 10 times harder than getting off of conventional opiates, and the nightmare from hell every step of the way. It is hideously ugly.

I don’t know how to say it any plainer than this: Suboxone/buprenorphine is, in my estimation, absolute poison, and one of the worst travesties of medical mispractice ever perpetrated on the American public. it is a scam to make a pharmaceutical companies rich.

When it comes to Suboxone/buprenorphine: just say no.”

***Today I opened up Facebook to find this response regarding my article from July 31, 2018. That’s is where I discussed Suboxone, Bupenorphrine & Naloxone. Please refer to that article (July 31,2018) if you need to “fill in the blanks”, so to speak.

I thought I would add his comments here. To be fair to all of my readers, I will also post my responses. I want you to know my reactions and the words that I used to make sure that my original post is not “confusing” to anyone else.

Here are the words that he wrote underneath my article that was posted in my CRPS support group on Facebook; called “RASEforCRPS” (the letters represent the words: Reserach, Awareness, Support & Educate) (*it was also posted in other Various groups & pages) :

I’ve been safely and effectively using plain Bupenorphrine, an opioid, in the form of Butrans patch for several years! I have also used the antidepressants and have been fine with both.

Each of my docs can order it without certification or special classes. It HAS been approved by the FDA for severe pain that needs round-the-clock management.

There is a lot of different info out there and there are other medications with Bupenorphrine in them. Here is some info! Here is a pharmacy times article about this:

“Belbuca Is the newest formulation of you been or for an available as a buckle films and indicated for the management of pain requiring around -the -clock, long-term opioid treatment not adequately controlled with alternatives. This reflects the new standard labeling required of all extended-release of yours indicated for Chronic Pain.”

“Buprenex IV or IM is approved for the relief of moderate to severe pain. This formulation is also used off-label for the treatment of opioid withdrawal in heroin-dependent hospitalized patients.”……..(you can read this article in its entirety here: Pharmacy Times article * that patient also gave this article for reference: Second article given to me by that patient

*******Here was my response to her post underneath my article:

The writers of your one article make the medications you are being prescribed. The information I have is from several trusted news organizations, and our government has been saying for years how big Pharma has downplayed the negative affects of their products. Lastly, I’ve known people who say that it’s much worse to stop taking (Bupenorphrine/Suboxone) than others that are not agonist-antagonist opioids. All I’m saying is that if you want to take that medication, even though it’s not approved by the FDA; you should have the choice to do so! But if the other kind of long extended release Patch has worked for other people, including myself for over a decade, then I/they should be able to keep the medication that has worked and hasn’t caused any problems for me whatsoever! I also have at least six or seven different articles where I found my information on the Internet.

There’s also this information below, which says the medication can be used for pain/refractory depression for “off label use” (then why can we not use the fentanyl patch for off-label use?)… there’s also contradictory information and most state that it’s ” only a low analgesic at best”!

In this article here Bupenorphrine- Naloxone Therapy in Pain Management , it states that these medications In the past few years, they have been increasingly prescribed off-label for chronic pain management. The current data suggest that Bupenorphrine /Naloxone may provide pain relief in patients with chronic pain who also have opiate dependence or addiction. However, the pharmacological profile of this medication states that it is a weak analgesic that is unlikely to provide adequate pain relief for patients without opioid dependence or addiction.

Therefore, just as I stated in my original article, these medications are probably OK for people who are struggling with addiction to opioids. But if you do not have an Opioid addiction or an opioid use disorder and you’ve been using the same opioids for Chronic Pain for many years, and they still help to give you a semblance of life & relieve your pain, then you are not an addict. So the Bupenorphrine /Naloxone may work for low analgesic pain relief in addicted person but not in chronic pain patients. That’s what I tried to state in my original article as well. I also said that the company (*Reckitt Benckiser) that is responsible for making the medication Suboxone/Bupenorphrine started this whole fake opioid crisis so that they could have a monopoly on this medication and get rid of all opioids. Therefore it was a “get rich scheme” for them.

Lastly, I’ve copied and pasted for you, only one of the warnings for the buccal Butrans patch:

The risk for serious, life-threatening or fatal respiratory depression. Physicians should monitor for respiratory depression, especially during initiation of the treatment or after a dose increase, the company said. “Misuse or abuse of Belbuca by chewing, swallowing, snorting, or injecting buprenorphine extracted from the buccal film will result in uncontrolled delivery of buprenorphine and pose a significant risk of overdose or death,” the statement adds.

• The risk for accidental exposure. “Accidental exposure to even one dose of Belbuca, especially by children, can result in a fatal overdose of buprenorphine.”

• The risk for neonatal opioid withdrawal. “Prolonged use of Belbuca during pregnancy can result in neonatal opioid withdrawal syndrome, which may be life-threatening if not recognized and treated, and requires management according to protocols developed by neonatology experts,” the statement said. If prolonged treatment is required in a pregnant woman, “advise the patient of the risk of neonatal opioid withdrawal syndrome and ensure that appropriate treatment will be available.”

After reading the warnings on these medications I don’t see why they are any better than regular opioids or the fentanyl patch? All medications, including heart medications, Coumadin & chemotherapy, come with warnings! But sometimes the benefits outweigh the risks.

Articles:

1:Bupenorphrine has not been approved for pain- but possibly off label can be a weak anelgesic

2: Are there other uses for Bupenorphrine