Down The Rabbit hole


alice1alice3

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

A Call To Action: The War Against Chronic Pain Sufferers & CRPS


Hello Luvs,

I wanted to let you know how excited I am that my blog post about this “war against Opioids” for Chronic Pain Patients, has made it into the Painnewsnetwork.org column and also now has found its way to the blog on one of the 2 National websites for RSD/CRPS ( I think it is on the other one, or on it’s way to RSDHOPE.org website also); RSDS.ORG and it is on their blog. I’ll make it even one easier for you because here is the link:  http://rsds.org/war-against-chronic-pain-sufferers/

Now I wanted to let you know that some of my posts, or many of them have been “password protected” for awhile.  IF you would like to read my blog in its entirety or read some of the protected posts, please please just drop me a quick email telling me who you are. I will in turn straight away send you the new password to those protected blog posts. Don’t be shy, I don’t mind at all. But there are some people who wish me harm and to those people, well we just don’t need them to read anything that may just flare up their tempers or any other unwanted behaviors, right?  Some posts, I just recently protected and those will be open again after awhile, some will always be protected. But please feel free to just ask, because you might get something awesome out of those posts and you may not feel so alone if you’ve gone through any similar situations to mine. Remember my new email and best one for this purpose especially is : RASEforCRPS@yahoo.com, and I won’t hesitate to send you the pw for all of the posts, so you can open and read them.

I was recently asked to be part of a documentary and I even spoke with the news employee and she was really very nice to me. I was going to do the documentary but then I got this bad feeling inside that it wasn’t going to have the same “take” about Opioids that I have in my heart. I’ve never taken an illicit drug, nor smoked pot, nor drank nor did anything considered “risky” or “bad” in my life really at all. I was always the “good girl”. I got hurt in a bad MVA in 2002, and I was forced, to take pain medications, have tons of epidural injections, nerve blocks, trigger point injections, Cortisone/lidocaine injections and I had 3 yrs of TBI rehab and 8 years total of PT and OT. and I’m DONE! The only thing that has helped me at all are the pain meds and I hated them at first. I didn’t want to take them and I was afraid.

You can be afraid, for good reason! If you have a “bad” Dr and he over prescribes and then leaves the practice and leaves you to “hang out to dry” without any help….that’s a bad Dr.!! Now I agree that there are bad patients as well. But the majority of chronic pain patients and those of us with CRPS are not “bad” patients  and we don’t want any meds to gain anything from it except Pain control. I will write to whomever I must to get someone to listen to me, to us and to help us! I will continue to write article after article and talk until I’m blue in the face and my pain is at a #9 if I must, to get someone to listen to me.

People with real pain, are the reason these Opioid medications were made in the first place. We shouldn’t have to suffer because some others abuse the medications!  There are many ways for all of us to be “safe” today with the pain contracts and the drug testing and the “MAPS” computer program and all kinds of things to keep everyone on the “up and up”. So Please, read my articles, in the short form or the longer version, I don’t mind either way. But Someone please listen to me, to us and let our voices be heard….As I started last November 2014 during “CRPS Awareness month” …Let’s “KEEP HOPE ALIVE” …that is MY SLOGAN and I’m sticking to it! #PainedLivesMatter

Thanks, Luvs,

Suzanne

Dependence Does NOT Equal “Addiction”


One thing to know is this …Physical dependence and tolerance are “NORMAL” physiological consequences of extended opioid therapy for pain and should NOT be considered “addiction”….(*FROM “Michigan.gov)determination-quotes-2b65cd82f385b22d6dd21fd2f9ce5bf9f

Hello Luvs,

Today I have so much on my mind and I have a lot of information to share with you. Most of the information that I have is from my own support group, my own experiences and Internet sources (which I will list).  I was in a Motor vehicle accident in 2002. I have been through so many medical issues due to that accident. I have suffered through 8 years of PT/OT, 3 years of MTBI rehabilitation, approximately 10 surgeries, worsening Dysautonomia/POTS/NCS, a CVA (stroke), Mild Heart Attack and just too much to list here today without boring you to tears.  I have chronic pain and along with that, my body ended up with a Neuro-autoimmune disease called “Complex Regional Pain Syndrome Type II”. It’s also known as “Reflex Sympathetic Dystrophy type II”. Some people will call it “RSDII or CRPSII”; as there are two types of this disease: type I is from an Unknown etiology and type II, the one I suffer with, is a result of a Foot surgery in 2007, 5 years following the car accident. My type is also called “Systemic”, which means it is in my body pretty much everywhere now. That happened by accident through years of it’s continue spread.  Then following my 2nd pacemaker surgery in 2013, the absolutely wonderful Neuro-Cardiologist, who did the surgery researched the disease and found that sometimes a surgeon can help prevent the disease from spreading or going systemic, by doing an internal surgical wash of “Bipvucaine”. I was hopeful and happy. I just knew it would work. The fact that he cared enough about me to even try that, made me just feel so happy and cared about. But unfortunately, it did spread and mine is now systemic.

At first I was tested, re-tested, Neuro-Psych tested, Psych tested, Pain clinic tested and given just any and every kind of test available. I had several specialists including:  a Physical Medicine and Rehabilitation physician, G.P, Neurologist, Cardio-Neurologist, Cardiologist, Psychologist, Neuro-Psychologist, Orthopedic specialists of different types and more! I ended up being hospitalized for “Pain control” by the  G.P.that I had been seeing since 1986! When a newer physician in his office came to see me and he was quiet and kind and really seemed to “listen” well etc. I asked if I could “switch” over to him, as it was the same office. It was all good and I had been referred to a pain specialist, Dr. D. Dobritt in Michigan. He helped me for 3 years and I did everything asked of me. I even got a medical record letter from the Pain Pycshologist and Psychiatrist Dr’s that he uses, stating that I do not have an “addictive personality”. I never smoked, drank or did any recreational drugs. I barely ever took an Aspirin if I had a headache prior to that car accident!

I stopped going to the pain Dr. because he told me that he wanted me to have an “Intrathecal pain pump” surgically placed into my spine, which would drip 1/300th of the amount of oral medication I would need. But I had been in an auto accident and I was tired of “fighting” for everything I needed with them. I did win a lawsuit and I was put into “Catastrophic claims”; but still could not get them to pay for the pump. I surely didn’t have the money and my regular insurance would not pay since it was not their place to pay for auto claims. I was going to try the pump trial at least, just to see what comfort it might give me. The auto insurance said “NO” and I’d about had enough of IME Dr’s and fighting for what I needed. I gave up and quit everything finally after 8 years of PT/OT and 3 yrs of TBI rehab and about 10 or more surgeries. I think I told you already that I’d been tested by the Psych Dr’s at the pain clinic and they gave me a medical record letter stating that “I do not have an addictive personality”.  It’s true and even when the Dr’s gave me Vicodin and other meds to try and help my pain, I suffered through the pain and always took less than what I was prescribed. The Psych Dr. even wrote in my letter that “Suzanne does not want to take the medicine for pain as it is prescribed, but instead tries to get by with less”. He continued by writing that He told me to take the allowed or prescribed amount and “not to worry” about it because the Dr. has prescribed it for me.  Well, if you know me at all, I’m a person who does not like being “controlled”. I did not ever want to be feeling “controlled” by some medicine or feel “married” to my pain Dr. !!  As time went on though, I didn’t just suffer from the events of the car accident. I acquired a very painful or the “MOST” painful of all chronic pain diseases, called “RSD- Reflex  Sympathetic Dystrophy” . I was first diagnosed with CRPSII by the surgeon who performed the foot surgery. I got a second opinion only because I’d never heard of that disease before and I just wanted to be certain. I got a 2nd opinion from a well known staff Physician who specializes in Orthopedics of the foot/ankle. Then I got a 3rd opinion and 4th opinion. My pain got worse and I was forced to take the medicine prescribed for me.

When I chose to not get the pain pump, that pain Dr. told me pretty much to “get lost”. No, he did not use those words, but that is how it felt to me. I always was a good patient and did all that I was asked to do and tried to do it even taking less meds than I was allowed to take. He would not even talk to me again or let me set up an appointment, but instead, he had his physician’s assistant, Jim G., give me the news.  He called and told me to “just go ahead and have my General Practitioner, Dr. Pete Bullach Jr, take over prescribing the pain meds because he, as a pain Dr., is “under a microscope” and prefers that the pain meds are not provided via his office. He said that “Dr. could consult with him any time needed”. He told me not to make another appointment because “there was nothing left he could do for me and my pain”. I was devastated because I felt that we had a good working Dr/patient relationship. I felt believed and I believed in him. But as usual, I just did what I was told to do and kept seeing my GP and he did the prescribing.  Unfortunately as my pain got worse due to more surgeries and the spreading of the RSD/CRPSII, and the new diagnosis’ of R.A., Chiari I malformation, Degenerative Disc disease and now Hypermobility syndrome III and more, the doseage was just increasing.  Dr. Bullach just increased my pain meds and offered me no other future or help for the future.

The past 3 years, I was asking him to take me off or down from the pain medications. I was afraid that I was taking too much even though it was helping. He told me time and time again that I should “just let him worry about it”. He also told me that the medications “got me out of the hospital bed that was in my living room” and I “don’t want to go back to that”! He told me to “let him worry about the pain meds and just continue to do what he said”. Every time I would bring up trying to go down in doseage, he would tell me to “just let him worry about it”! He even told me that he had a plan worked out that when he felt ready for me to go down on my pain meds, that he would just put me into the ICU at the main hospital. He would “knock me out” for a few days and they’d watch me carefully because of a previous CVA and heart attack in ’05 and ’06. When I awoke, I would be “off of the medication” and not have to go through any withdrawls, or at least not remember or feel it at all. I would be safe and watched in the ICU. In no way did I feel like I was an “addict” or a “bad person” at that time. I felt that I was doing everything I was told to do by a Dr. that I trusted with my LIFE and my husband’s LIFE!

Well, from my couple of previous posts about this subject, you can understand how totally betrayed and flabbergasted I was in December 2014, when with only 2 days notice, I was told that Dr. Bullach “was leaving and going to work at an Urgent Care an hour away in Jackson, MI”. Later I’d find out that he’d known about his new position since October 2014, but failed to share that information with me and many other of his patients.  In October I had even brought him a letter from my medical insurance company, stating that they would not pay for my pain meds any longer in the doseage that he was prescribing, after March 11, 2015; unless a certified pain Dr.agreed with his treatment plan. I brought and showed him that letter in October and he told me “not to worry at all”.  He said that he “would personally speak to my old pain Dr., D. Dobritt, and he would send a letter explaining everything to him and some of my records that he would need.”  He told me that I had nothing to worry about, that he would “take care of me and of everything”.  When I walked into his office that December day, in 2014, you can imagine how blindsided I felt.  Then later to find out that he was investigated by Federal marshals or agents (I found this out from a legitimate source or several actually)for over medicating many of his patients and he was actually “fleeing” to get out of trouble before trouble came to him first!!  He fled to an Urgent care facility where he’d be incapable of writing such prescriptions again. He lied straight to my face telling me how he was “working too much and he missed his sons and he was going to work someplace else to be able to free up time and be with his wife and kids more often”. It was a bold face lie, he betrayed me and it feels really awful.

I went to the pain Dr. appointment on Jan 2, 2015 and in my previous posts, I think I already explained what happened. I told him that I did not want to and would not go to a “Detox” clinic. That was not what I deserved after being told even by him several years ago to “trust him” and “take the meds prescribed” and that “it was OK and it was safe”. I am a strong and motivated person. I’ve been through alot of terror and frightful experiences, including painful ones. I can do this and I will do this. My husband called and made a second appointment for Dr. D. Dobritt, the pain specialist. He told the secretary that I’d been going down on my own, with the pain meds and that I’d gotten down at that point, at least by 75% of what I’d been taking at the time of my visit one month prior!  I went to my scheduled appointment that was at 8:00 am on Feb. 16th, 2015. If you know anything about pain, you know that is very very early for someone who has a hard time just putting their feet on the floor in the mornings, due to extreme pain. Add into the equation 75% less pain medication and you have a woman in some real pain, but a determined woman who was doing everything on her own with the love and support of her husband. When I arrived at the pain Dr. appointment, they let me sit in the waiting room for about 1/2 hour, only to find out that “the Dr. will not see me”!  What??? Why?? Why would they let me make the appointment? I smelled something rotten going on there and it was an awful feeling.  I had some young office girl tell me that the Dr. refused to see me “unless he had a letter signed from the DETOX Dr. (*Dr. H. Malinoff) that he had recommended that I see at my last visit”.  I told the girl that I’d already gone down on my own 75% or more! I told her that I didn’t need anyone else’s help. I was not an “addict”, I would Never take Methadone or Suboxone and after researching that Dr. who Dr.Dobritt wanted me to see, I realized that he was not for me! A person who is on SSDI for PTSD and who’s suffered at the hands of numerous “bullies”, just did not need another “bully” (Dr.) in her life! I read 16 reviews of this physician. ALL 16 were really bad reviews! People said he was “Dr Jekyll and Mr Hyde” and that he “put them into tears by calling them names”. I don’t go by reviews usually. I know that disgruntled people or patients will write bad things when they don’t get what they want sometimes or when they are angry! I don’t put alot of heart into what I see usually when others write bad things like that about Dr’s or places even. I know that there are disgruntled pain patients out there who want more meds and when they don’t get them, they go to the computer and write nasty things about the person who didn’t get them what they wanted. I know this is true of SOME, but not of ALL!  I know this because I am one of the valid/honest writers & readers not asking for anything except the truth and peace.  I’m not being vindictive in any way.  This is just a venue to allow my readers and other pain patients hopefully, who are like me, to know the truth of what has happened to me and what can happen even to honest and good people.

This “detox” Dr., as I read more about him on his own website; told of a story how he broke his foot and “walked on it for 3 months.” His wife finally forced him to go to Orthopedics and he had a surgery. He tells of how he “went through all of this without taking any pills for pain”.  He also stated how if someone wakes up in the morning, puts their feet on the floor and they have “no pain”…then they should “look in the Obituaries, because they should be dead if they have no pain whatsoever”!  I could not believe this was a Dr. who was revered by this other pain Dr. and the physician in the GP’s office who took over a few of Dr. Bullach’s patients!  This guy who takes people off of pain medications from the moment they walk into his office, and puts them on a program of Methadone or Suboxone or worse; and then forces them to go to 12-step programs can NOT understand what living day in and day out, 365/52/7/24 in chronic intractable pain is like?  Having a broken foot for 3 months and it “hurting when the weather changes” is still not the same as having: systemic CRPS II, RA, OA, Chiari I, Long thoracic nerve pain, bilateral patella femoral pain, Lumbar and Cervical Radiculopathy, Polyneuropathies, and Degenerative Disc Disease all at the same time!! He does not know what PAIN truly is.

A true pain patient like myself tries hard to hide it. This is sometimes mistaken as “not really feeling that badly”. We try hard to hide our daily struggles with pain because of this exact situation. We try to hide it because nobody really understands. Try to think of a time when you were in really bad pain, then multiply the intensity by 10 times or more! Then imagine having that intensity of pain day in and day out like I mentioned above for 365 days per year, 52 weeks per year, 7 days per week and 24 hours every day without relief or without very much relief! Try next to imagine this pain is never going to go away! It’s going to be there for the rest of your life. That kind of pain is hard for anyone to imagine, but it’s nothing like a broken foot for a few months! Also, taking medication that several Dr’s all knew you were on for 12 years or more and doing exactly what you are told by your physician, your GP, does not make an “addict”.  Just because I put on make up and try my best to look as good as I am able, does not mean that I feel wonderful at all!

I feel as though I am “stuck” in a body of which I have no control. I have to go each and every day with nobody truly understanding what I go through. If I talk about it too much, then nobody wants to be around me. If I don’t talk about it, then they think it’s not there. It’s a no win situation even when I visit the Dr’s office. They want you to give them a Number of how you feel, on a scale from 1-10, with 10 being the worst pain you have ever felt.  First of all, that would be different for everyone because maybe the worst pain you’ve ever felt was an ingrown toenail (and those do hurt, by the way!)?? What if the worst pain you have ever felt was childbirth? At least you get a “prize” at the end of it and there IS and END to it! So you see that cannot work for everyone. Just like my pain is in various places throughout my body. My shoulder may be a 3 today but my lower back may be an 8! But they only want “ONE” number to describe your pain that day!!! Geesh!

I’m luckily getting some guidance from a GP that I’ve known since 1986. But he really doesn’t want me for a patient. He feels “stuck” with me because my GP left in a Hurry and I had no place to go!   I refused to go to a pain /detox Dr. who wins prizes for writing these “great articles” about how he “helps” people with pain get off of their medications. This detox Dr. gets articles in “Detroit Hourly” magazine for his “greatness”.  Well, talk to the patients because anyone can be “book smart” and write an article with precision and big words. But not every Dr. can have empathy and accept a challenge with dignity and kindness. That is what I want, a physician who will treat me with the respect that I deserve. One who will look at me and not my husband, when I bring him into my appointments with me. Lastly, I want a Physician who will listen to me and believe in me as much as I believe in myself.  It’s taken many years for me to believe in myself. But I know that even though this is awful, painful and very difficult; I can do it!  But then what next? I will always need something for pain! What do I do as I decrease my pain medicine dosage even more? The pain is increasing and my mobility is decreasing. I can now do something for an hour before I need to stop and go home to rest. Prior to this time, I could at least go out for a few hours before having to go home and rest.

Lastly, just because a pain patient can do something one day, such as go shopping for 2 hours, doesn’t mean that the next day or next week they’ll be able to repeat that. Chronic pain is such that it is just as confusing to the patient/sufferer as it is to their friends, family and physicians. It is like “hot and cold”…..one day we can do something and the next day we may not be able to do it. I may wake up tomorrow and not be able to “go out to lunch” as I had planned. Friends and even family get upset when we cancel plans. Each day is different and we never know how we will feel. I try very hard to be “normal” and chronic pain is hard to understand if you do not suffer with it. The Dr’s who are “pain” Dr’s have not suffered from it, for the most part. They don’t know what it feels like, they only know what they learned from a book and from their patients. If they are a good pain Dr., they will learn from their patients.  Remember, nobody WANTS to feel this way. Shame on the Dr. who sent me away because I wouldn’t go to the “detox” Dr. whom he wanted me to see! Shame on him for not helping someone who he’d already known, trusted and believed at one time and for 3 years! He wiped his hands of me and didn’t want to be involved with helping someone else’s “mistake”.  Just shame on him! The worst thing that you can say to a chronic pain patient  when they are taking pain meds, is to say that they have a “drug addiction”. People who do not have a history of addiction or problems with drugs, and who are living with chronic pain, like myself, do NOT WANT to take these medications or narcotics!! WE/they need them to function and get through the daily activities of living. Our Body is physiologically dependent on them and we are tolerant of them.  But a definition of “addict” is not equal to “someone in horrible chronic pain with a legitimate chronic pain disease who has been prescribed Narcotics / Opioids to help ease their pain for years and then suddenly someone decides it’s time to take them away and send them to Detox!

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Trials of a Chronic Pain Patient…..


imagescanandwill  Hello Luvs,

Have you been betrayed by your Dr? Do you feel like a “common criminal” because you are a legitimate chronic pain patient? Then please read on:

So if you follow my blog at all, you know that my GP, or my General Dr. of the past 13 years just quickly left the practice he’d been working at for many many years. I had an appointment in October 2014. I showed him a letter that I’d rec’d from my insurance company stating that I must go to a pain specialist and that he/she must agree with my GP’s treatment plan; in order for them to continue paying for my pain medications. The letter also stated that If the pain specialist did not agree, they would stop paying for my pain medications on March 1st, 2015. My October 2014 appointment was only for the purpose of making sure my Dr. would help me arrange the pain specialist appointment, send him a letter & call him to explain my extensive and unusual situation. My GP, had been the one person I trusted other than my husband of 18 years and my Psychologist of 15 or more years. I don’t trust many people due to my longstanding history of being abused and being a survivor of domestic violence. That is a story for another day, but you need to know why I feel so betrayed!

Since my car accident in 2002, (*a man ran a red light and I was injured terribly), I have endured so many injuries, surgeries; including 2 pacemakers, along with suffering a Mild Traumatic Brain Injury (3 yrs of TBI rehab), a stroke and a heart attack! Then to end up in 2007,after a foot surgery with CRPS type II. The CRPS II then spread and has been systemic since after my 2nd pacemaker surgery, when they found that my 1st pacemaker had worn a hole right through my pectoral muscle; which then had to be rebuilt.  My excellent Neuro Cardiologist researched RSD/CRPS and found that sometimes an inner surgical wash of “Bipvucaine” (*which he did do) may help stop the spread of the disease. At or about my 6 week post op checkup, I found out that my CRPSII did spread and it is systemic. My pain is very high and I have several other pain illnesses and auto-immune/Neuro autoimmune disease.

I had been to an excellent, well respected and kind pain Dr. He has a good bedside manner and is very intelligent. He tested me in every way possible. I followed through with whatever tests he wanted and I did all that he asked of me. I had several Epidural blocks, trigger point injections, Cortisone shots, Biofeedback and more. I was tested by the pain Dr’s own Psychologist and Psychiatrist. They concluded that I did NOT have an addictive personality. After trying many pain medications which either made me ill or that I was allergic to, we found one that actually worked well for about 2 years. When all else failed, I was offered an intrathecal pain pump; but refused it.  I am a smaller stature person and could not imagine something the size of a “hockey puck” inside of my gut & under my left rib cage forever!.  Finally, I was put on a pain patch for 24/7 relief and pain lozenges for breakthrough episodes. Because I was only receiving pain medicine and needed it in order to try to have any kind of quality of life whatsoever; the pain Dr. referred me back to my GP, who was Dr. Bullach. He  told me that he would be  “the eye in the middle of my storm”. He would prescribe all or most of my medications. I lived with those meds for the first 3 to 7 years. Finally, the pain stabilized and I stayed on the same dosage for the next 5 years.

I started out after the car accident, being in a hospital bed in my home or on my couch as well. I could not even move without excruciating pain. When I got to the point where I was put on the pain meds that Dr Bullach gave me for those 10 years, I was able to do a few things. I was able to get out of the house. Every time I would ask Dr B. to reduce my level of pain meds, he would tell me “No …you let me worry about it. You don’t want to end up back on that couch or hospital bed again.” He told me that “I should not worry and if/when the time came & I was able to reduce my pain medications, he would “put me into the ICU so that I wouldn’t have to go through anymore pain”. He told me that I would “wake up and it would be over without my having to go through feeling any of the withdrawals.” But every time I would ask him to let me reduce the amount, he just told me the same things. I trusted him and He told me that he was “the eye in the middle of my storm”. He told me not to worry about anything! I did trust him, but still I worried.Though I’m very naive, when it comes to medicine because I never drank alcohol, smoked cigarettes,pot, nor had I ever taken any prescription pain or street drugs in the past; prior to that car accident. I am a lay person and had no idea what a good amount or a right amount of pain medication is. I trusted my Doctor for that!  I wish to reiterate that I asked him over and over again, to let me reduce the pain meds.  I acquired RSD/CRPS in 2007, after surgery on my foot. I have it as well as the other car accident injuries and surgeries. Later, the RSD/CRPS II spread to my full body.

So….in going back to that letter that I received from the insurance company, I took it to my ex GP, Dr. Bullach in October 2014. I felt it inside of my heart and soul that very day, that something was not right! He looked me deep into my eyes and said “you need to just see a pain Dr and he will agree with my treatment and its just a formality.” I told him that I was afraid….scared and could I go back to the same pain Dr. that I had known, liked and been to for several years prior. He said I could go to that pain Dr and because I was crying and afraid, he absolutely promised me that he would  call and personally speak to the pain Dr. and send him everything and /or anything that he may need in order to help me get my medications continued and paid for; in order to keep my pain at least at the level it’s been at,so that I could continue to have some sort of a life outside of laying on the couch in pain all of the time.

When we left that appointment in October, I told my husband “something was not right today”….I said that it felt weird and different. I told him that Dr. B. looked at me so oddly as if he wanted to say something but instead he was robotic and went about his business. I took him at his word when he said he “PROMISED to call that pain Dr. and send him a letter with all of the info he might need, in order to help me.

I made my pain Dr. appointment for Jan. 2,2015. But prior to that appointment, I had one more appointment with Dr. B. and had no idea what was in store for me. Two days before the appointment, with no prior knowledge; I received a letter from the other Dr. in the practice, the one who actually owns it.  It was very short and just said something like “Dr Bullach will no longer be seeing patients in our office as he accepted another position at an Urgent Care in another community, Jackson, MI; about an hour away”!!! I was not only shocked and devastated, but afraid and just couldn’t stop crying. I trusted another human being and yet another human being broke that trust! All I could think of was “what is going to happen to me now?”

I went to my appointment, the last appointment with my Dr. Bullach. I spent the whole entire visit for about 40 minutes, just crying. They never examined me, nor even touched me. I didn’t get my blood pressure checked, my heart wasn’t listened to and I have Atrial fib, Long Q.T. and a pacemaker.  The Dr. did nothing that day (he did nothing the prior appointment as well, which I also thought was odd). It was as if he’d just given up on me and didn’t care anymore. He would not give me my prescriptions that he’d been giving me for the past 10 years (although no increase the past 5 yrs). He told me again, “not to worry because the other Dr. in the practice would take care of me just the same and he would prescribe the same meds and everything was going to be O.K”. The medical assistant, “C.” even told me those exact words. She even told me that “if the new Dr. didn’t write the scripts the same way Dr Bullach did, that she would take him into the hallway and explain to him what to do and how to do it”.  They all told me “not to worry” and “my treatment plan would stay the same”.

I went to my pain Dr. appointment on Jan 2nd, and he was surprised to see me. He had no idea why I was there. He had received ZERO information from Dr. Bullach !  There was no letter sent, no phone call absolutely NOTHING came from that office. Finally the pain Dr. decided to call that office and he spoke with the other Dr. there. He came back to tell me that the Dr. I’d trusted all of these years, had “over medicated me up to many many times the normal amount”!! I was in shock as was my husband.  I was angry and afraid!  I suffer from PTSD which is one of the health issues that has rendered me “disabled” since 1998! The pain Dr. and the other Doc at  my GP’s office spoke and  “THEY” decided that I should go to a brusk,  physician who doesn’t believe in pain medication except to detox people! He detoxes everyone and puts them on something else like Suboxone or Methadone as if all  legitimate pain patients with HUGE list of pain diagnosis’ like mine, are just equal to a common criminal. I researched that Dr. and we spoke to the Dr. who owns the practice where my GP had treated me for all of those years.  My research proved that the “detox” pain Dr. does NOT believe in Opiods, Narcotics even for legitimate pain issues, diseases etc. He has 16 horrible reviews on several “rate your Dr.” websites.

When my husband was on the phone with the Dr. who owns the practice where I’d been going all of these years, I could hear him yelling over the telephone while my husband was talking to him. He was angry and yelling loudly. He said that “Federal Marshals came into their practice, and that my Dr. B. over medicated many other patients, not only me! I’m furious to say the least. But I also heard him say that he could no longer see Dr Bullach’s regular patients or prescribe meds for them any longer.

I am feeling so betrayed and hurt and afraid. He left me on a high dose of medicine and gave me no choices except to go to a scary place and have all control taken from me. Let alone, all control taken from me by a brusk, angry type of Dr. (according to many many of the rate your Dr websites!).  My psychologist and everyone who truly knows me, says that is the very worst thing anyone could do to me. I suffer from PTSD and I’m very afraid of many people. I’ve been abused and assaulted and even sexually molested and I was absolutely NOT going into some unfamiliar place and lose all control!

Well, that was then, on January 2, 2015. Even though the pain Dr. wont see me yet, or have anything to do with me until or unless I’m down to a very low amount of medications for pain. I have done it myself and have tapered off of the meds all by myself. In the past I have had a stroke and a heart attack. I have a pacemaker and I have Long QT and A-fib. I have several, awful,terribly painful illnesses but I still am doing it myself!  My “stand in” GP, who sort of “took over” when the other guy got in trouble and left; and who is not happy that he got “stuck” with me as his patient, said that he “got stuck with a mess when Dr Bullach left him with all of these pain patients that the Dr. just kept giving meds to. How could a doctor do this without caring about “US” as real people? Why would he do this to me? I want to live a good life! I’m a mother, wife & grandma and I have a lot to live for. I have a loving and wonderful husband. I’ve not ever done anything illegal or immoral. I’ve never hurt anyone on purpose and I was always so afraid of dishonoring both God and my own father /parents; therefore I just was always a “good girl”. I stayed and grew into a “good woman/person”. I never even took an Aspirin for pain before that car accident, when I would get headaches in the past!  Would he have done this to his wife or his sister? I just will never understand and I truly feel so sad and betrayed by him.

I have been to the Neuro Cardiologist who said that while I was there for my appointment in January, I was diapheretic *(sweaty from tapering the medications), and my heart was in Atrial fibrillation.  Luckily I have a pacemaker. The Atrial fib is just annoying. I’m being paced with a dual chamber pacemaker. I have a cardiac monitor next to my bed which is watching my HR and BP  24/7/365. It’s connected to my pacemaker via some kind of air waves, making the A-fib a bit more safe.  I’m also on Coumadin, which  helps with the blood clots that Atrial fibrillation can cause. I am keeping track of my tapering and I’m doing this all by myself. My husband is awesome and he’s there for me. He’s helping me by reminding & writing it down with me. I will show everyone that I am strong and that I can do this.  If you are not an addict…if you are only taking what is prescribed by a legitimate Dr. and you are a good, person…then why not be able to take what helps you the most and gives you some semblance of a life? Why treat someone like that as though they are a “common criminal”??.  I only went to one Dr. for all of my medication. I’ve only gone to one pharmacy for the past 26 years! and I asked for the past 3 years, for help in reducing the amount I was taking. I am now down to 1/3 of what I had been taking and I will find someone to help me from now on. I will need something for pain for the rest of my life. I have REAL pain illnesses and real diagnosis’.

The above is just about me and my own story. Maybe some of you have been through it? Maybe you know of someone who has a real chronic pain illness? I’ve done some research online, if I refer directly to something specific that I’ve read, I will tell you where I found it….otherwise it is just general research and my opinion mixed together with my own experiences. If I can help just one person who is suffering, then I won’t be suffering in vain. It appears that Opioids can be a safe and good treatment for some people with non malignant chronic pain. From reading about research I’ve found that there are risks and benefits to the use of Opioids for chronic non malignant pain. The potential risks could be abuse and awful side effects. These can be tolerated and/or managed at least. I think if you have tried all of the things like I have tried, including trigger point injections, epidurals and nerve blocks, TENS, biofeedback, and you just get minimal improvement and only for a little while; then maybe it’s worth a try to be considered for long acting Opioids. I also have heard that if you have nerve pain and you are unable to take antidepressants or anticonvulsants, then Opioids are worth thinking about for these patients. They usually recommend that when someone is given these meds, they should be willing to start out with low doses and start out very slowly.  Hopefully their pain will be relieved if they can tolerate the side effects. People like me, who suffer from multiple chronic pain issues and horribly nerve pain illnesses, should be able to have access to any kind of treatment that has any possibility of improving their symptoms.

About 3 years ago, I started telling my GP that I wanted to reduce the dosage of the pain medications I’ve been taking since 2005. It seemed to me that no medication should be continually taken without having full benefits. I asked many times and each time he would tell me that I didn’t want to “end up on the couch in my living room again in horrible pain; or be in the hospital bed again, like I’d been the first 3 years following the MVA. He was the Dr. and I was the patient so I relented and just listened to him and trusted him. A person who is “addicted” psychologically does not ask to have their pain meds reduced because they are afraid of feeling “married” to it. I didn’t ever like that feeling of having to take something or else I would get sick or sicker! That frightens me and tapering the meds, is the best and safest way for ME to do it. I don’t suggest it for anyone else. You need to check with your own Dr’s and do what they tell you to do. But since the Dr. who knew me very well, turned out to be a bad man who betrayed me and lied to me….well…now I’m back to not trusting anyone again! I know that I do not “crave” the medication in my mind. Psychological dependance is confused quite often  with serious substance abuse and the literature is quite confusing. The Diagnostic and statistical manual, edition IV, (DSM-IV) defines substance dependance as a more serious form of substance abuse. This more serious kind of substance use is characterized by tolerance, withdrawal, overuse, craving, inability to cut down, and excessive preoccupation with respect to obtaining the substance. But substance abuse is characterized in the DSM-IV by use leading to failure to fulfill roles/responsibilities, use in hazardous situations, legal problems resulting from use and use despite negative consequences.  Other studies of chronic long term opioid therapy found that all patients who developed problems with opioid use had a “PRIOR HISTORY OF SUBSTANCE ABUSE”! (hence…NOT ME!)..

There is a lack of any true quantity of research regarding the data for long term opioid use. Many Dr’s prescribe opiates for their chronic non malignant pain patients. Mostly because the alternative treatments for long term management of pain most often fail!! From my readings and research lately, I have found that the opiates usually work for awhile but not always so great for long term use. Sometimes they seem to work in long term situations but I guess there needs to be more evidence and research on that idea. As for me, I feel like it worked for my pain, since I have so many places with nerve pain and so many issues with long term pain. I think it should’ve been reduced a long time ago, because I feel a difference already. I’ve tapered down to 1/3 already in 3 weeks and now when I take the meds, I can actually feel it working after just a few moments; the break through meds. Before I started tapering, it seemed as though I had a constant ongoing “everywhere” pain that felt firey. I just continued my prescribed regimen because that is what I was told to do and each time I asked to stop and /or reduce the amount or try something else, I was pretty much told to “shut up”. I wish Michigan, the state in which I live, could adapt the state of Washington’s patient assessment and care guidelines for the use of opioids for chronic non-malignant pain. You can find this at: http://www.agencymeddirectorswa.gov/Files/OpioidGdline.pdf.  In short, it explains how It includes limiting the dose and amount prescribed, using urine testing for illicit drug use and treatment compliance and asking about alchohol, tobacco and drug use history prior to starting any opioid treatments.

Everything I’ve learned and from my own experience tells me that there is a low risk of addiction in naive chronic pain patients. Someone like me who has never smoked anything nor been a drinker of alcohol, has a very low risk of addiction. I think it is downright hurtful and abusive in certain ways, to keep medication that can help someone’s pain, away from them. What about Dr’s who withhold opiate anelgesics? The problem again is that we just don’t know how long they are effective? In (Kalso et al, 2004)  it was proven that opiate analgesics  effectiveness can be sustained for up to 8 weeks. The problem is that I don’t find any studies that prove their effectiveness after the 8 weeks time period is finished. Also it was shown with lab animals that dependance and pain can possibly get worse with long term use of opioid analgesics. Another issue is tolerance, though this hasn’t been shown in a clinical setting. Increasing dosage to maintain pain control is very common. Many animals in studies do show tolerance (e.g. see Chan et al, 2007).

Sometimes something called “hyperalgesia”  can develop when long term use of opioids happens. This really can mess up and complicate things for the patient and the Dr as well. This was proven  and there is evidence suggesting that this may happen in pain patients on daily opiate therapy (Cohen et al, 2008).  Opiate drug addicts and true pain patients are very separate sets of people. I never touched drugs or alcohol and I’ve always striven to be a person “on the straight and narrow”. I’ve never had any trouble with addiction and I was tested during my time as a patient at the pain management clinic. I was tested by their Psychologist and Psychiatrist.  Their tests proved exactly the same as what I had always known to be true; that I do not have an addictive personality.  In the clinical studies referred to above proved also that opiate addiction due to appropriate medical management of pain is rare! Doctors have a hard time because they feel that it’s difficult to know who is faking pain just to get a prescription. However, the person who is lying to get the meds is already an addict, therefore the Dr is not creating one!

As I mentioned towards the beginning of my post today, more research is needed to decide which pain patients would benefit from treatment with Opiods.  I feel that anyone who is tested and proven to not have an “addictive personality” and who also has proven to be a true chronic, non malignant pain patient; with real HIGH pain health issues/conditions/diseases should be given a chance. I believe also if a patient is asking their Dr. to reduce their opioids because they are willing to try less, then the Dr. should listen to them. Maybe they will go through some tapering withdrawals, but nothing intolerable hopefully. In my case its not been fun but now I’m at the last third of the tapering process. I CAN do this and when I’m finished then I hope to find some respectable, reputable pain management specialist who will welcome me to their practice and help me stay on a maintenance dose. I’ve already notice and noted that I can now feel my “real” pain in the places where there are real problems. When I take a breakthrough medication, I can now truly feel the pain lessen; where before when I was over medicated, I felt a constant burning, nagging 6-7 out of 10 on the pain scale pretty much constantly. I was afraid to NOT take what my Dr. prescribed, thinking that maybe it would worsen to a 9 out of 10, which I didn’t want to tolerate. I can now feel as I’m tapering down on my own pain medications, that when I “over do” my activities a bit, then my pain goes up. When I’m laying “low”, the pain seems to be held at bay a bit.  This has always been true but when I was on higher dosage and over medicated by my Dr., I felt a constant, more steady nagging “all over” pain. I can feel a distinct difference in my pain now.  I know that I didn’t and don’t have hyperalgesia, because my dosage stopped going up 5 years ago but my pain did not increase until my RSD/CRPS II, spread to “systemic” in 2013, and I acquired Lymph edema in my left arm and pain/swelling in my left chest area as well.  My pain was semi controlled and I could do a little bit more on a good day just as I could do a little bit less or nothing much, on a bad day. But I still kept wanting to lower my dosage.

This has turned into a mess for me and for my life. I’m afraid that I’m going to be in horrible pain for the rest of my life? Please…anyone with any ideas (**other than “detox” for a me, a person with no history of abuse of any kind) on where I can go? What I can do? Please leave kind comments or email me if you like…thank you for reading my long post today. I hope I’ve helped someone today!

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