What My Pain Dr Told Me


Hello Luvs,

I wanted to write to you today to share with you something that I know many of us are dealing with these days. It’s about what happened at my pain management Dr. appointment on 11-8-18. First of all, every 30 days, I have to go and endure this treatment and I live with PTSD. It always rears its ugly head the day prior to my appointment with this Dr. or any new Dr. appointments. I’ll just refer you to my other article “Down the Rabbit Hole” if you need a reminder as to what has occurred up until now.

I arrived at the appointment which was in the late morning this time. I usually go in the afternoon because mornings are difficult for me, with my pain issues. But the past 6 months or so, I’ve had horrible anxiety when I know this appointment is drawing nearer. The closer it gets, the worse I start to feel psychologically and physically with the above symptoms on top of the pain. I decided to make this appointment in the morning because I thought it would not ruin our day so much. Just “get it over with” and be done; get on with our day. But it once again, did ruin my/our day.

I’ve had this pain management Dr. since July 2015, after my other Dr. of 15 years left suddenly. At that time I had been on the fentanyl patch and the lollipops for 10 years. This Dr. told me he would only accept me if I took myself off of the lollipops and I did it. I had to suffer through physical dependence withdrawals. I did it at home with my soulmate, my husband.

I’ve never rescheduled an appointment with him, nor have I ever been late. I’ve never run out of meds or asked for them early.  He knows of every medication that I take or have taken and honestly, I don’t feel like its up to me to have to “remind” him that I sometimes take Fiorcet for Chiari Migraines. He and I had a mutual respect sort of Dr./patient relationship up until April of this year 2018.  But that day everything changed and it turned out to be nothing that I did wrong. He had forgotten that I take Fiorcet and it doesn’t always show up on MAPS (Michigan Automated Prescription Service – *explanation found here*: https://www.michigan.gov/lara/0,4601,7-154-72600_72603_55478—,00.html) because its such a low risk medication and not a high class either.  But whether it shows up on the MAPS is not up to me. Nor is it my fault in any way if it shows up or not, as long as he’s known from the beginning that I’ve been on it for more than 7 years.  This one particular day in April, he started being rude to me for no reason whatsoever. I went to my appointments in May, June and July.  But I was horribly anxious and very “ill” prior to each appointment, due to anxiety and PTSD symptoms.

This last visit was another horrible appointment and was the final one for me. I am done being treated like a criminal or an addict! I’m tired of feeling “put down”! I’ve never smoked or drank; nor have I ever taken any drugs. I received one more short acting script and now I will be tapering myself slowly off of the short acting medication as well. It will be horrible because it’s already horrible. It will be difficult and it’s already difficult.  He lied to me in July, telling me that “in Michigan, Fentanyl patch is illegal for him to prescribe (he is a pain management Dr. and Anesthesiologist MD), unless someone has malignant cancer”. I know this is not true and he told me that “I am smart and should be able to verify this online”.  I checked Michigan law and the fentanyl patch warning on the box. It says only that it is “for chronic long term moderate to severe pain that will not be going away.” If anyone has any idea where I can find this in writing; I welcome that information.

I got a letter from my GI Dr. (*see letter below) because he felt it was dangerous to take me off of the Fentanyl patch. With Gastroparesis, SIBO and Chronic Erosive Gastritis; along with EDS type 4/vascular and more, I am not able to metabolize the long acting oral meds. Believe, me, I’ve tried many things and either was allergic, got very ill, it did not help at all or it had large valleys and spikes. The patch just worked for my pain and it was the best match for me and my multiple co-morbidities.

Yesterday’s appointment he told me that “Chronic pain does not kill anyone”. I told him that I was in my recliner now 16+ hours per day due to the pain. He responded by telling me that my cardiologist should not have put me on Clonidine. I’ve been on it since 2015, but went off of it for awhile in between. He knew this also but apparently it slipped his mind because that must be what’s making me “tired.” But in reality, it’s the pain that’s keeping me down. Also, I only get about 4 hours of sleep on a good night.

My cardiologist told me to take 1/2 of only 1mg at night. He prescribed it for me and said it would help with the physical pain & dependence withdrawals. Thank goodness someone cared enough to help me a bit!

I tried to explain that I had resigned from many activities that I was able to do with the medications. He told me that none of this has to do with the medication for pain being taken away after 14 years. He went on to say that “Susan (you’d think after 3.5 years he’d get that my name is “SUZANNE” not “Susan), you and other chronic pain patients are hostages to the pain medications”. These are the same medications that he was fine with for the 3.5 years I’ve been going to him! He also knew that my history was even longer. I’ve been taking opioids since 2005, in order to have some semblance of a life. But just for the record, I’ll let you know that I tried everything else possible fir 3 years, before resorting to the opioids.

This pain management Dr. has told me all along that he cannot make my pain go away. But he can help lessen the pain by prescribing opioids. When he made the “hostage” comment, I responded with; well “instead , now I’m a hostage to the pain”. Yesterday he told us (my husband & me), that all of his patients still tell him they have pain “with or without the pain meds”. I responded by telling him “Yes, that is true, but I had a life with the meds and I have no quality of life now. The pain medication dulled the pain without ever giving me any kind of “high”. Now the pain is much more sharp, pronounced and at the front of my thoughts. I’m not able to concentrate much or put the pain in another place at the back of my brain.”

I started to explain to him that I have several “Physicians, pain physicians and nurses that are my friends online”.  I added that this past week I was diagnosed after an echocardiogram, with “left atrium enlargement”. I’ve had a heart attack, a CVA and a TIA twice. I have Atrial fibrillation, Sick Sinus Syndrome and a pacemaker since 2003. I’ve never had CHF but that’s what this means. I told him that “chronic pain can kill and under treated chronic pain can make blood sugar and blood pressure rise”, which has been happening to me.  He became very upset with me and started to pontificate about how “each symptom needs to be treated by a Dr. who takes care of that problem.  If my blood sugar is high, I need to go to a diabetes Dr. and if my blood pressure is too high, then I need that addressed by a physician who takes care of that issue. He went on to say that “chronic long term pain does not and cannot kill you.  Only acute pain can possibly make BP and HR etc. rise.” But from Dr. Tennant’s own account in his article (Practical Pain Mgmt. By Dr Forrest Tennant MD , from another article, by Pharmacist Steve Ariens, ( Harmful Effects of Untreated Pain )  and this article that I had written last year (that was also published in Ntl. Pain Report), “Chronic pain can kill” (Untreated Chronic Pain Can Lead to Sudden Cardiac Death ), he is the one who is lying.

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

Some “Gifts” From The CDC


Hello Luvs,

In writing to Sandra Cashman, MS, Executive Secretary to Office of Chief of Staff at the CDC, I inquired about the CDC guidelines. I wrote about the way that pain patients are being harmed. Telling them how many people including me, are being force tapered. I asked if the “Fentanyl patch” was truly illegal now; for anyone without non malignant cancer pain (as my pain Dr recently told me. He also told me that “I’m educated and should be able to find this info to corroborate what he’s telling me”)!

Below is the response that I received back from her, along with all of the “educational” materials that they sent to me. You may or may not be able to use any or some of this info that I’ve posted. But if it can help you in any way, feel free to copy & paste anything that may be helpful to you. ***PLEASE NOTE THAT THESE ARE NOT THE LAW. THESE ARE JUST THE GUIDELINES AND BROCHURES SENT FROM THE CDC (which may be or most likely is bias)…

Enter a caption

Another File along with the full CDC Guidelines are here for you:

1). https://www.dropbox.com/s/xqqcpgtd659ti23/Folder%202417475_Opioid%20Tapering%20Rules%20-%20Suzanne%20Stewart%20-%20CDC%20%20%20Guideline%20for%20Prescribing%20Opioids%20for%20Pain%20Management%202016.pdf?dl=0

2). https://www.dropbox.com/s/799ks1z3eam8ikr/Folder%202417475_Opioid%20Tapering%20Rules%20-%20Suzanne%20Stewart%20-%20%20%20Fentanyl.pdf?dl=0

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, Politics, Suboxone & Bupenorphrine


Please watch this informational video about the a patient removed from the only medication that helped lower pain. Also, much information regarding the dangers of Suboxone /Bupenorphrine.

Pain, politics & Suboxone/Bupenorphrine

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

Letter To Leaders of Oregon Forced Taper


Below I’ve copied the letter that I wrote to the leaders of the state of Oregon, regarding their new proposal for forced taper off of all opioids in their state:

To Leaders of the state of Oregon,

I am writing to you with a plea for all of your constituents, as well the entire chronic pain population in the USA. What you are proposing to do, by eliminating opioids, is considered torture by the World Health Organization. You are also setting a precedent for other states, if this action against all opioids goes through!

When I’m proposing a big change, even just in my own household; I try to put myself in the place of other family members that my change will affect. Please put yourself in the “shoes (so to speak)”, of the thousands & later on, millions of chronic pain patients that you’ll be affecting and in reality, torturing. If you remove all opioids from your state, the suicide rate will increase dramatically and many intractable pain patients and their families will suffer.

Please think about what you are doing to trauma victims, burn victims and people with horrible chronic pain illnesses and cancer. Would you want to suffer with daily horrible pain, or would you want to take something that has been working for possibly even a decade (or more); to give you some semblance of a life with your children, grandchildren and/or your family. 

Please reconsider this act of cruelty and torture on those living with chronic pain in your state (& then future areas as well).

Thank you for reading my letter and I truly hope that your conscience will help you make the right decision for people who live with pain 365/24/7. Also remember that it could be you or your child, wife or parent at any time. We never know from day to say, what might happen. One minute I was sipping lemonade at an art fair; the next moment, I was hit by a car when the driver ran through a red light. This started my life of pain and I never could have imagined what this new life would be like.

Peace & Hope,

Suzanne Stewart

**Below is a photo screenshot that I took Of the reply that I received back from them: