Down The Rabbit Hole

Down The Rabbit Hole

By: Suzanne Stewart


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 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 saying 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 than me 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 which 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. Pete Bullach, Jr., MD, promised me that he would personally make a call to my former pain clinic and Dr. Dennis 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 teased, put down, called names 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.

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

9 Responses

  1. In 1976 my father lay in a hospital in convulsions,the end hrs.of his pancreatic cancer.Even then,they wouldnt give him treatment for the pain because it would”possibly kill him due to his sinking blood pressure”that was their excuse.I had to watch,Dad had to endure till finally comatose and death.What I saw made me wish I had a gun.would have put Dad out fast and ended the existence of a ‘doctor’with no concept of compassion.Now all these years later,I am a CPP who is super blessed with a rational dr.But!come the future,I am faced with the chance he could be railroaded,or maybe lose the practice for any number of other reasons[personal health himself?]and I could be stranded also.And for me,there is only one outlet-suicide.Unless Jesus gave me an immediate supernatural healing,I could not continue.And I’m not ready to throw in the towel just yet.No 2 ways about it!I believe any doctor who ducks out on treating chronic pain must be held to malpractice suits.Yes,I know they think they are guarding their livelihood,but enough lawsuits,successful or not,throw a cog in their wheels.After a few years of this,the govt.clamping down will be forced to re-evaluate.Dont forget to ask candidates running for offices.If we stick together,I feel we can defeat the witchhunt.Not any comfort for people in dire staits now,sadly….Yes,if I am cut off,I would certainly hunt street drugs!I freely admit that!!whatever it takes to stop pain.In time,the crazies that have declared war on us will get it!Keep praying for sanity to prevail.Meanwhile,I send empathy to all that are in this boat,cause I am a passenger as well.

    • Andrew; I am so sorry about the torture they committed on your father. I had to watch my mother die in unspeakable agony in ’97 from the bone pain of the leukemia that killed her. Like your father, there was no question whatsoever that she was going to die, and soon, and there should have been not an instant of hesitation about giving her plenty of pain relief (like your father). It’s beyond insane that anyone can think it’s okay to force someone to die in agony when there’s not the slightest chance that they’re going to live.

      There should be no discussion about whether it’s okay to force someone to live in agony, either, but here we are again. I also depend on pain medication to have functionality and quality of life, have never abused it, doctor shopped, used illegal drugs, or any of the other things we’re repeatedly accused (& automatically convicted) of. I, too, pray that sanity will prevail, but when I look around at the world, I don’t have much hope. I will keep fighting, though.

      Oregon is currently proposing to ban ALL opioids for ALL pain conditions, no exceptions, for low income patients (medicaid & the state “health plan” for the poor), which adds blatant class discrimination onto medical abuse. I, along with 30-40 others attended a hearing last week to protest & testify, and i plan to go again to next month’s meeting. I don’t think they actually listened to anything we said, but I couldn’t forgive myself if I didn’t at least try. I know every person who showed up is still paying for it with increased pain, but we gotta try to fight the insanity.

      I dearly wish we could find attorneys willing to stand up, but it seems they’re all hiding under rocks. Even the disabled veteran, Robert Rose Jr, has been unable to find an attorney to help him with his case (the VA cut him off his pain medication entirely, 2 years ago, & he’s been fighting them ever since). He has a gofundme campaign to try & keep going.

      Best wishes to you, and I hope you have a low pain day.

  2. The story is sad, and repeated over and over across the country. And yet, even though the answer is available, no one takes it. That’s the sad fact.

  3. Hi Suzanne,

    I am sorry this is happening to you. Although I would say file Civil Rights complaint and complaint to Doctor’s Governing State Board, I understand that this will not provide you relief in the short term.

    Are you able to get a lawyer to speak on your behalf? Maybe one can get a taper stalled for short term. There are a few things that can be presented to a lawyer in order to help such as the WHO Guide complete with United Nation input. Also Red Lawhern’s A White Paper & CDC Guidelines themselves. If not a lawyer, how about a paralegal? I know that for many the cost would prohibit consultation so I understand if this isn’t an option. Here in Ontario my sister was able to get legal aid in regards to a tenant dispute, is this something that might be an option in your State? Is there a Patient Ombudsman?

    Some people think that opioids aren’t guaranteed so there is no Human Rights violation so to dispel that argument I like to think of it another way. Your doctor is obliged to treat you as he would anyone else. You obviously have documented history of disease along with documented success of treatment. Your doctor would NOT take away essential medication from someone who is suffering from another disability therefore to take essential medication away from you just because you suffer from Chronic Pain is discriminatory.I used the word “just” not to minimize your suffering but rather as a display to show how unreasonable it is to take away medication.

    You are also a member of your Health Care Team and entitled to participate in your treatment plan yet he is yanking essential treatment away without your consent. He has completely disregarded your concerns. He would not do this to anyone else who suffers from another disability. Therefore, again, he is discriminating against you.

    You are also entitled to Informed Consent and have every right to be informed of all reasonable treatment options. In keeping with Informed Consent you have the right to be informed of benefits & risks of all reasonable treatment options and you have the right to be informed of consequences of refusing treatment. Your doctor has the education skill and judgement he needs to safely treat your symptoms but he chooses not to because you are disabled by Chronic Pain.

    Here in Canada we have The Provincial Health Care Consent Acts and I am betting that there must be something similar in the USA. Could there be something in the Affordable Care Act or has that been dismantled? If not in the ACA can you think of other legislation concerning your rights when receiving health care?

    If you do see a lawyer or file complaints keeping them as short as possible and to the point would help decrease costs. Less may be more.

    I hope yo get the care that you need.

    • Wanita, sorry to give bad news, but hundreds (if not thousands) of pain patients here in the States have tried –and failed– to find a lawyer. It seems to be a combo of not being rich enough & being part of a group that it’s now a good thing to discriminate against. It’s apparently not only acceptable but admirable to attack chronic pain patients.

      google “Robert Rose Jr,” a veteran who’s been trying to sue the VA to resume his treatment with pain medications for over 2 years; he can’t get an attorney, either. The good ole ACLU consistently refuses to do anything; many of us can only deduce that they’re in the pockets of the anti-addiction lobbyists, who stand to make multi-millions off this insanity.

      they might as well just stick us all on ice floes & shove us out to sea (if there are any ice floes left).

  4. Suzanne I am so sorry about what’s happening to you. It’s extremely saddening.
    You are right the stress and anxiety before going to a doctor appointment for a sick person is extremely wrong and now should be called
    Pre-TSD another new crisis created by the system.

    What’s happening today with legitimate pain patients is Torture and that’s a crime!

    But please know your not alone honey. It’s happening to everyone where I’m going, at least to all the patients that I spoke to in the waiting area. Most were cut 50% that day.
    Cutting stable patients is Inhumane.

    The Physician kept saying it was the new laws. According to the new laws. Well the new law says chronic pain patients are exempt. So I called him out on that being incorrect so then he started saying it was the insurance companies. They won’t fill it. That’s was wrong too He was very nervous, rushing and just came out with excuses and rushed out of the room.

    So someone is lying and high pressuring these doctors to fail on their Oath.
    It almost makes me think that the Government is telling the patients- The public what they want to hear to appease them to keep them quiet all the while they are threatening, or telling the doctors something different, especially pain management centers. Otherwise, why in the hell are they giving false excuses- Lying to patients ?! They have no excuse other than Fear. There shouldn’t be any fear with documented health conditions on medical records.

    Stable patients are having their lives Ripped Away. This not okay.
    Strange things are also happening to Out spoken
    advocates who have confronted Gov officials.
    All of this is criminal.

    Can this be stopped? I don’t know. Is this a Geniocide?
    Some think so.

    • Donna; I used to not believe in conspiracy theories. Now that I am a member of a group that certainly seems to be targeted for removal, the skepticism is one helluva lot harder to hang on to….

  5. This story is similar to my sister, self, and Too Many others across the USA. Who can Read This and say this isn’t Torture ? As A 58 yr old woman Also with Chronic and Co-ocurring diagnosis, as-well as Added New painful and Chronic Diseases Purely As A Result Of Covert Poisons Nonconsentually, And W/O Knowledge or Warning, Reconfigured In All Of My Meds for Co-ocurring – Chronic Illnesses. The Illegal, Unethical, And Inhumane Way We Are Treated, And Not-Treated By Others, No-less Medical Doctors, Not Only Effects Our Pain, And Brain, But Also Creates New Terminal Diseases, Those Are: A Broken Heart, A Shattered Soul, And The Deepest Sense Of Hopelessness And Grief Anyone Will Ever Know. When Fellow Human Beings Become So Cruel, Abusive, And Degrading Of Those Enough Already In A Stake Of Emergency, This World Is Nolonger Sustainable.

    • Amen,,,,”anonymous,”,,,The bigots,,those who think they have the right to decide how much forced physical pain a ,”fellow,” human being should forcible endure,,The arrogance it must take,,,to think they have the right to decide for another ADULT person,,,HOW MUCH forced physical pain a medically ill person should forcible suffer,,,

      The truth and the fact is,,we as cpp,or IP,,,,are being torture,,,, no-one’ has the right to torture a medically ill person,some to death.The truth is,,any who thinks they have that right,to torture anyone is right up there w/Hitler…The truth is it has open the doors for every arrogant doctor,nurse,lawyer,common public,and politicians’,,to exercise a prejudice against all theee medically ill..Case in point 2 c-sections,,w/no medicine to lessen the pain of a freaken baby being cut out of a womens body..These bigots have brought medicine backwards 50 years!!!!!!Where hammers are being offer’d to knock u out for a surgery!!!wth!!!This ,”World,”thank goodness has many different nations,,and the United States is thee only 1,,arresting lawful doctors,,lawful patients,,No other country has done what America has done to its pre-exsiting,medically ill!..The Neanderthal mentality has got to stop,,or we might as well start living like some animals who think taking the life of another living entity is just ,” nature,”,Nooo its animalistic ,neaderthal nature,,Anothersward not HUMANE,maryw

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