Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!
People With Pain Matter! This Video is about my Chronic pain, CRPS Story & other Info. As well! A plea re: Opioids and correct information regarding subject also! #peoplewithpainmatter #painedlivesmatter #KeephopealiveforCRPS ….Opioids don’t kill people!~ People Kill themselves when they take Opioids with alchohol and illicit drugs like Heroin. Pain Patients control their medications and not the other way around as in drug addicts. Statistics prove that most overdose deaths are not reported correctly to the public. Chronic pain patients are “lumped together” with drug addicts and we are NOT!
Wow…One week has passed….and I have been free of the Fentanyl Lollipops for 7 days now!
I would say that growing up in an abusive home was horrendous. Being robbed at gunpoint at the age of 11 years; in a shoe store with my family, was just terrifying. I also think that getting married, being abused and getting remarried all the while being abused even worse, was pretty challenging. I didn’t know what “challenging” was though, until I had to flee the marital home with my two baby girls; along with help from the domestic violence shelters. My little girls were only 3 and 5 1/2 and I was 30 years old. Later I was diagnosed with PTSD and “Battered Woman’s Syndrome” and found some solace in trusted Psychologist whom I still know to this day. I had felt that battling Anorexia & depression on and off since the age of 17 until I cured myself following a horrible motor vehicle accident in 2002; was brave and courageous. Having gone through Acute renal failure, being robbed again in 2013 and being involved in 2 Motor vehicle accidents, through no fault of my own, I thought I didn’t exactly have such an “easy” life. The second MVA in 2002, I suffered numerous injuries and multiple surgeries; including several pieces of hardware placed in a few different parts of my body. I’m on my second pacemaker, the first being “a piece of cake”. Meaning that the second pacemaker surgery in 2013, did not go quite as planned. After getting into my chest, the Neuro-Cardiologist found out that the 1st pacemaker had worn a hole right through my pectoral muscle. Then not only did I need a new pacemaker, but the 45 minute to an hour surgery turned into a 3 hour ordeal in which my whole left pectoral muscle had to be rebuilt. The team was smart and did research on RSD/CRPS, a Neuro-autoimmune disease that I ended up getting after my 7th surgery. It was the surgery on my right foot in 2007, in which the horribly painful nerve disease started. It spread and it spread until it went systemic following that major open surgery in 2013. I even endured a CVA and a mild heart attack in between the 10 surgeries following that MVA in 2002. I suffer from an MTBI (mild traumatic brain injury) and went through 3 years of TBI rehabilitation to learn how to cope with: not being able to cook when nobody is home (because I may leave burners on and hurt my family or myself), not being able to comprehend what I read anymore after having been a College graduate with a 3.9 GPA! I had to learn how to live with leg braces, hearing aids, special prism glasses, balance issues, much less concentration capabilities and just about zero short term memory! The worst of these being the chronic nerve pain and all of the pain following those years and still to this day.
I went to a pain Dr. for 3 years and he did everything from epidural nerve blocks to trigger point injections and biofeedback along with pain Psychology appointments. I was so happy when I read the notes from the pain Psychologist’s because they wrote that I was not an “addictive personality”. I never drank, smoked, did any drugs….prescription or otherwise! I was one of those “good girls” who had always tried to be “teachers pet” and get a 4.0 GPA and still try to get “extra credit”. Of course I’m a “type A” personality person who likes to do things the right way the first time if at all possible. I always did my best at everything I endeavored. I made alot of mistakes but always came back and tried again, while pulling up myself by the “bootstraps”.
The chronic intractable pain that has gone along with all of my injuries and surgeries since 2002 and then the diagnosis of CRPS in 2007; and later the shock of getting the “full body/systemic CRPS” has been traumatic to say the least. I was always very cooperative and followed whatever the Dr’s told me to do. I trusted again and again and again; when most people would’ve given up long ago, I just kept believing in the “goodness” of people or at least trying to find some good in all people. If you’ve been following along at all, you’ll know that I met Dr. Bullach, my GP for 12 years, in 2002 during a hospital stay following that MVA. I was in there for pain control and met the pain Dr at the same time. I trusted him right away and thought he was a kind and “teddy bear-ish” type of personality. He told me that I “could trust him” and that “he would be the eye in the middle of my storm”. He said he would help me and cooridinate specialists and take care of all of my medications etc. He told me “not to worry”. We tried every medication under the sun, it seemed. Everything either made me deathly ill, very sick or I was allergic to it! By the time we were finished and had found one thing that finally worked for my kind of pain, there was something of a “book” of all the meds that I had tried and which had failed for me.
Finally, I tried the Fentanyl patches and they made me nauseous and really “loopy”. I went ahead and tried them again because I just felt that a patch was so easy and you didn’t have to think about it all the time, many times per day etc. It finally helped to relieve my pain. I had a hospital bed in my home because I couldn’t even get in and out of bed or get any sleep due to the amount of pain I was living with at the time. I had been offered a “pain pump” that they fill with morphine, by the pain Dr. ….but the auto insurance was fighting me so much and I just didn’t have a whole lot of “fight” left at that time. I also already had 2 screws in my right shoulder, a jaw implant and had a pacemaker! I didn’t want anymore “things” put into my body. Especially not something with a catheter that would’ve been stuck into my spine that had multiple herniates and bulging disks, degenerative disk disease and Scoliosis. Luckily I didn’t get the pain pump because later we found out that I suffer from Hypogammaglobulinemia, a blood disease that means I have an immune deficiency in my IGG, IGA subsets of white blood cells. I could have become paralyzed and could have gotten numerous infections had I allowed that pump to be placed. I made the right decision for me and today I’m so glad that I did.
So I had been in a “pain pump” support group, just to find out information for myself about the pumps and to make friends with the same kind of pain issues that I suffer from. Everyone was so kind and many were knowledgeable. Some of the people mentioned these “pain lollipops”. They said that they helped a lot and very quickly for the terrible nerve pain. I checked in with my GP, Dr. Bullach about them and he started me on them right away. That was in 2005, after I’d finished treatment with the pain Dr.and he’d put me back in the hands of my GP. He told me that because I didn’t want a pain pump and I was going to go the medication route for my pain, that it’d be better for me to be in the care of my GP. He agreed that Dr. Bullach would prescribe the pain meds. He told me that my Dr. could consult with him at any time and he would help. He also agreed that it was better for him this way because he was “looked at under a microscope” and didn’t like prescribing pain meds.
These experiences were all difficult, painful, scarey and life altering; but nothing prepared me for what I’ve gone through this past week with the withdrawals from the Fentanyl lollipops. I’d been prescribed them and had been taking these for the past 10 or 11 years! Time just kept passing and the regimen was working; although I asked many many times over especially the past 3 years to get taken “way down” from the amount I’d been taking of the pain suckers. Dr. Bullach just kept on telling me to “trust him” and that he “was the eye in the middle of my storm”. He told me that he’d “gotten me out of that hospital bed in my home”! He reminded me that I was able to at least get out and do a little bit more than I had been before the lollipops. So I trusted him; though I still continued to ask him to slowly take me down because I felt that I was falling so often (6 times in 2014 and 6 concussions!!!) and though I have balance issues, I thought in the back of my head that maybe it was partially the fault of the meds? I never even took an Aspirin for headaches in the past, prior to this car accident and the injuries from it. Now I was wearing 2 patches of Fentanyl and taking sometimes approximately up to 20 or + lollipops daily to control my CRPS and the other pain issues. I had even woken a “sleeping monster” in that MVA in 2002! I had been born with “Arnold Chiari I malformation”. It showed up on the MRI after the MVA. It is a congenital defect in which the tonsils at the base of my brain stem get swollen and do not fit correctly into the spinal cord column, causing great pain for some people and others never know they have it! It all depends on many issues and variations. The horrible whiplash being my 2nd one and then the MTBI, “woke up” the sleeping congenital defect. Hence, another horrible pain issue to where I cannot even hold my head up for long periods of time without causing great pain.
So as you’ve probably been reading my past few posts, you know that my GP just abruptly left in December 2014. Without any feeling, caring or the tenderness I’d seen before in his eyes; he just told me he was leaving and that that appointment would be my last one with him. He promised he’d talk to the pain Dr. that knew me. He assured me that my treatment would be and stay the same as it had been because it was working! He promised also to send my records to the pain Dr and to personally talk to him on my behalf. I had received a letter from my health insurance company, stating that they “would no longer pay for the Fentanyl lollipops for pain after March 11, 2015, unless a pain Dr. agreed with Dr. Bullach’s treatment plan.” He told me not to worry about a thing and again to “trust him”. Well, as you know, none of that ever happened and the Dr. who took over for Dr. Bullach’s patients got left with a “mess”. He could not handle the volume of patients on top of his own, especially the amount of “pain patients” that Dr. B. had accumulated!! Luckily for me, I’d been a patient in that office since 1986, and had a history with that other Dr. as well. He reluctantly helped me get the pain lollipops and patches, but was swift to inform me that he was not going to be prescribing the amount that I’d been taking under the other Dr.
I was afraid, but I was motivated. I have been through so much, but it has made me a strong woman and a survivor. I took myself down from 20+ suckers daily down to only 8 in just a couple of months time. I cut my amount of the patches in half as well. I went through some hyperalgesia and some misery, but I did it! I was taking less and less as I was looking for a pain Dr. to help because the other physician in that practice didn’t feel comfortable prescribing the kind of pain meds that I needed to survive now, with all of the pain that I live with on a daily basis.
Finally, I found a nice pain Dr. and luckily I carry my records with me when I go to a new specialist. I had everything in order and I felt “safe” with him right away. He told me to finish up the pack of pain lollipops that I was taking and then go to sleep on July 12th taking one last sucker. Then I was to wake up on the 13th of July, and never take another Fentanyl lollipop again; after 10 or 11 years of taking them, it was over! I was starting a new pain management regimen and I was fearful, but knew I could do it! The first day was not so bad until the night time. I did crave the mental picture of having something that my brain associated with immediate pain relief! I felt nauseous, achy all over and I was so hot, I thought I was going to spontaneously combust!! Then I’d get chills, diarrhea and started to vomit. I felt jittery and anxious and didn’t want to do anything but cry and sleep and lay on the couch! I made a video of how I was feeling at 5:00am on the 2nd day. The second day was more of the same and the third day was the worst! I did manage to go with my husband, daughter,& my 2 granddaughters to an hour or so of the kids “music in the park Wednesdays” Summer program.on the third day. I returned home sicker than ever afterwards! Finally, I started researching on forums and “You Tube” etc. I learned that if I took a medication called “Clonadine” aka “Catapress”, it can sometimes help with the withdrawals. I called the GP and within an hour an half, I had the Catapress in my body. It was the first thing that actually took a little bit of the edge off from the withdrawal symptoms.
The pain Dr. didn’t seem to think I’d have too much or too many symptoms because he said we were “faking out my body” by switching to a different BT pain medication….something more safe and not made for “end of life” and “terminal” patients.with Cancer. He told me that the pain lollipops were/are dangerous, “very dangerous”. He said that I should never have had them. So I’m not sure why my body still went through horrible withdrawals, maybe because of my many bad pain issues? But I felt like I just was going to die and really didn’t care if I had, at that point! I’m so lucky that my husband is a teacher and he was home for me. Also, my oldest daughter lives nearby and she was a great help and has been. She even was calling several times daily and was stopping over to bring me some “Gator aide” to help my electrolytes along with my favorite food, “french fries”, to get me to eat something substantial!
Well, today it is one week and I am Fentanyl lollipop free. I’m very proud of myself for doing this without having to go anyplace and get help elsewhere. I was afraid because I had a previous heart attack and stroke and I’d had seizures following the MVA for about 6 months. All of those things can happen when going through withdrawals. I’m so very lucky that these things didn’t happen again. I don’t feel good yet. I feel very tired, heavy and I still have stomach aches and diarrhea, along with nausea and depression on and off. I think I’m over the “hump” or the worst of it. I think I will get just a little bit better each day. It’s going to be very very hard because for over 10 years I had a “quick” relief when I was on an outing or needed quick breakthrough pain relief.I have to retrain my brain and myself to just plan ahead and take what the pain Dr has prescribed for me now, about 45 minutes before I may need it. That’s not going to be easy and the new meds are feeling like they’re ripping out my tummy. People tell me that is the withdrawals and not the meds. I’m willing to see this through and keep on keeping on!
Thank you for allowing me to share my journey with you and I will certainly be keeping you posted. Thank you again…..Also, if you would like to watch my very dark (because it was middle of the night with no lights on and I was crying very much) “You Tube” videos, please email me for the link and I will give it to you. I have them not ‘private” but “unlisted” …so if you have the link from me, you will be able to watch them. There are three videos altogether right now for this experience thus far. Again, my email is: email@example.com…..g’nite luvs….
Well my friends, today is the end of the 2nd full day of my withdrawals from the major doses of Fentanyl Lollipops that my old GP had me on for the past 10, 11 years now. Yes….I do have many high pain issues but he should not have done this to me. Nothing I can do now, I cannot whine or complain because I must get to the business of getting off of these totally and never going back. But I cannot say that I’m not afraid. The suckers are so far the only thing that have worked for my horrible pain! Everything else either makes me really sick with awful side effects and nausea or it doesn’t seem to work well for me. Today I’ve felt a little bit less of the “wanting” for the suckers. I have felt chills and I have also felt as though I am going to burn on fire until I am just ashes on the floor. I feel so hot …..no..you just don’t understand….I feel so hot and I sweat and I’ve had this feeling all through my RSD/CRPS too, but this is even more powerful. It wakes me up at night and I’m soaking wet and I just wanna “die”. No …,not really. …I don’t want to leave this world or die…it’s more of a “feeling” when that happens that I just need for it to end right then and I cannot take it for another moment.
Today, I had to go to my GP…it’s only my 2nd time seeing him. I am unsure about him. The other one, my old one..he did take over when his partner left after 12 years. He did get me the meds that I needed to keep me from being so deathly ill or dying. I think that he thinks the only reason I went to him was for the suckers. Well, he used to be my full time GP and I started seeing his “new” partner 12 years ago because he was so “nice” to me and kind when I was hospitalized for pain control. I had been a patient at first of the Dr. who has taken over since my GP of 12 yrs left abruptly after over medicating many of his patients including me . **My former Dr/GP went to an urgent care in Jackson Michigan called Med express. He cannot write controlled substances anymore because the FEDS came into their office and he was found to be over medicating people. Unfortunately, I am one of them. I have been a trooper, motivated and trying with all of my might to get lower and lower doses of the pain suckers since January 2015. I got down 80% and now since Sunday night going to bed with one in my mouth, I’ve had ZERO….NADA….NONE!!! I’m now in my 2nd full day and at the end of it actually.
I was a patient there actually since 1986 and the Dr. who has taken over my care, WAS and had been my GP since that time and until I asked the “new Dr” to be my GP when I was hospitalized in 2002 following a MVA. I only stopped seeing the first Dr. because of my parents, who had been horribly abusive on many levels while growing up and even as I was an adult and I confided in him. He helped me to get my SSDI and he believed in me. Until one day 10 years later, my parents walked into his office and started becoming his patients. Instead of him telling them that it was a breech of some kind or unethical or something, he came to my patient room and told me “wow your parents are now my patients too! They seem like nice people and they say that they’ve done none of the things you alleged that they’ve done!! You seem like a nice person too and now I don’t know who to believe”??? Well, that was enough then and there I got up and left that practice. I tried a few other Dr’s but didn’t really like any of them. Then after the car accident I got scared because I knew so much was wrong and I had so much pain issues. I needed to go back where my records were and where someone knew me and my history. I told him what I thought about what he said and did and then the new dr arrived on the scene and to make matters easier for everyone, I started seeing him, Dr. Pete Bullach Jr MD.
Well, he helped me and told me that he would “be the eye in the middle of my storm”. I wouldn’t allow anyone else to prescribe meds for me. We tried many different pain meds and they all made me ill, sick, and left with my pain. They didn’t work for me and 99% gave me very bad stomach issues including pain and cramps. I finally found the suckers and they worked for me. They worked for 10 years for me. I did suffer from a heart attack shortly after starting them and then one year later I suffered a CVA. Who knows if the suckers were the culprit or if it was the TBI or any other number of reasons? But I’ve since read that the Fentanyl lollipops long term, can cause such problems with health. The pain Dr. I have now and who I’ve only seen one time so far and will see again at the beginning of August, he says that they are for “end of life” and they are “very dangerous”. I don’t understand the dangerousness of them though? Why am I able to stay on the Fentanyl patch and take Dilauded but these are not dangerous?? I guess I just don’t understand. I am just blindly doing what I have to do because either way I need to get off of some of these things because I absolutely HATE feeling “married” to these pain meds and the men with the power to write them for me. The Government thinks they know what pain patients need and they think they know which kinds of pain are worse than other kinds of pain. Who are they or anyone to say that One pain illness is more painful that my very painful pain diseases called “COMPLEX REGIONAL PAIN SYNDROME” or “CRPS aka RSD”…??? I will never understand but I don’t care. I am strong and have always been strong. I don’t like the feelings of withdrawals and as of day #2, today, I don’t crave the “sucker” part so much. But in waves I feel terrible and in pain and tired, exhausted and sick. I don’t know what will happen but I pray that this new pain Dr will be good to me and keep on believing in me …
I dont know if I have shown you the letter that I have written to the : Dr who took over for my old doc who got into trouble, to my old GP who is at the Urgent care now and the same letter was sent out to the pain Dr who took good care of me and I was a good patient of his from 2002-2005, but when I went back for help at the beginning of this ordeal on January 2nd, 2015, he refused to help me or see me unless he could pass me off to a “friend of his” to be “screened” first by him because he must not trust his own judgement? I’ve sent them all a letter and I would love to share that letter with you. Below please see a copy of it. I do praise the one doc for helping to take over me and help me through this even though I’ve heard that there are and have been very very many that he just totally “threw overboard” and “let go” and gave them a script and sent them on their way and told them “not to come back”. These were legitimate pain patients because I knew or know a couple of them. I feel or felt the need to get out what I needed to say. I truly am thankful for the one Dr/GP for helping me to go down 80% off of the suckers. But I had no choice in the matter. I was and am at the mercy of all of these people and I absolutely hate it. With my background of abuse and PTSD, it pains me to have someone else in charge of me and my care. I can only hope that the new Dr will continue to believe in me and care for me in a kind and caring way and never give up on me.
So here I sit at the end of day #2 and I’m feeling very very ill, hot and burning up as if to be on fire! I feel cramps and runny nose and eyes and cannot eat much or hold in anything much. I’ve been trying to to drink but when I have hot drink, I burn up and when I have cold drink, I feel freezing cold. Everything is screwed up and I feel like I am unable to concentrate on anything. I am vlogging this experience on YOU TUBE also. So far they are “private” and if you want to watch them, please email me : firstname.lastname@example.org and I will put you allowed to watch the videos. There are 2 so far and they are dark and made at night, very late when I’ve been feeling my very worst. Thank you for your interest and I hope one day that this account of my days going through this ordeal, will help someone. Also, things that help with the fire or “on fire” feeling are : cold paks that are in the fridge, around my neck and cold drinks. When I’m hot I try wearing light clothing and drink more cold drinks as I’ve said and I’ve been sitting stilll, quite still. I’m having a hard time with concentration too. Please check out the letter that I’ve sent out to all 3 Dr’s, below…..thank you again, Suzanne
Dear Dr’s Brateman, Bullach and Dobritt;
I am writing one letter in the same, to all three of you. First of all, to save myself the work of trying to say many of the same things to all 3 of you. Also, this way you’ll be able to better understand how I felt about the breakdown of our patient/Dr. relationships.
First of all, I want to say “thank you ” to Dr. Brateman, for allowing me to stay on as a patient and help me reduce my pain medications. Between Jan 1st and July 13, 2015, I brought myself down to Zero, from the huge amount of Fentanyl prescribed for me (by Dr. Bullach). Dr. Brateman was the only physician who had the guts to stick by me. I’m a chronic pain patient with quite a list of real and horrible pain issues, including Systemic “CRPS!
I have been through a lot in my life, but this has got to be right up on top with the worst treatment of a human being that I’ve personally felt. I’m astounded and ashamed at the treatment I’ve received from Dr Bullach , who told me for 12 years to “trust him” only to be betrayed and left to suffer on my own, if not for Dr. Brateman.
Next, I went to my scheduled appointment on Jan 2, 2015 with Dr. Dobritt. He informed me that he “never received a letter, records or a phone call from Dr. Bullach regarding my case”. Another deception by Dr Bullach. During that same appointment, Dr Dobritt initially indicated that he supported the treatment regimen that Dr. Bullach had me on. But then he “back peddled” and referred me to another pain Dr. I told him that I didn’t wish to see another Dr. I’ve already seen multiple specialists as a result of a MVA in 2002. He’d been my pain Dr. for 3 years following that MVA and I had trusted him.
I went back to Dr. Dobritt in April 2015, after I had gotten myself down 80% from the Fentanyl prescribed originally by Dr. Bullach. I thought he would be proud of me. Imagine my shock & dismay when I arrived and Dr Dobritt refused to see me. He sent a clerk to tell me that he would not see me because I had not gone to be screened by the other pain Dr. prior to this appointment. I cried and begged for him to help me. I was afraid and felt alone in my physical pain and feelings of betrayal and mistrust with the medical professionals who are bound to “first do no harm” according to their own creed. I felt betrayed by his obvious attempt to pass me off to another Dr. instead of helping me.
Because of my own tenacity, I have since found a caring pain Dr. who has helped me get completely off of my former regimen of pain meds. He was equally appalled at the way I had been treated by physicians that I had trusted. Dr. Bullach, your actions; and Dr. Dobritt, your inaction, put my health and possibly my life at risk. You should both be ashamed at the way you treated me and you left Dr. Brateman to clean up your mess. I hope that the two of you do some soul searching and NEVER treat another human being the same way that you have treated me.
With deep sadness, Suzanne Stewart
So here I sit, as I used to write about heartache, heartbreak and of things in the past, now I am writing to you in writhing pain as my Physician of 12 years just up and left many people in pain and left us out to allow fate to have it’s will with us. I know that I’ve written to you of late, how my Dr left and how angry and upset I’ve been. I wrote about how the pain Dr. that knew me in the past, right after my car accident in 2002, wouldn’t even see me or help me because of a “situation” and for no other reason. He didn’t want to be “involved” in a mess of being inundated with pain patients from this physician. I’m pretty sure some of them may have been unreal and faking their pain but many, like myself, have real pain issues. I think I told you also about the other Dr. who owns the practice and how he is very very angry at being “left with a mess” of pain patients on all kinds of pain medications and way too much! This would mean, including me! My old Physician left, but in the past 12 years he was like a big “teddy bear” and kind and he had kind eyes. I never thought for even a moment that he would leave me “out to dry ” like this…..or even “to die”. I don’t want to repeat myself, but I have much to say about this subject and I think maybe people can learn something from this experience. You have to stop being afraid, like I have been or had been in the past. Sometimes I am still afraid but I do my best to keep on going and not be afraid.
Back in 2002, I was in a horrible car accident. I was poo poo’d by the hospital called “St. Joe’s” here in Ann Arbor ,Michigan. I had been on disability since 1998, for PTSD and CKDII. When my disability was approved, they called my husband and told him that I “didn’t even have to go to their own Dr’s because after reading my several Dr reports, they didn’t want to put me through having to tell my story even one more time. I was approved!” I tried to get the nightmares and the fear to stop. I was trying so hard and the possibility of trying to return to my job at the U of Mich. hospitals as an Interpreter for the Deaf and as an Outpatient clerk III, felt like it just might happen one day. But then in August of 2002, a man ran a red light while fighting with his wife and I was hurt bad as his car T-boned my car and I lay unconscious on the cement afterwards. I was out for about 20-30 minutes I was told. Then taken by ambulance to the hospital where they did some Xrays and put me in the ER for many hours and left me there. One Dr. was wanting his shift to be over and he was going to send me home. I had just been screaming so loudly during Xrays, that my husband said people were leaving the waiting area so as not to hear my screams of pain. The nurse that was assigned to me that night, I wish I could thank him someday in person. He saved me. When that one Doc was going to try to just “send me home” when I couldn’t even stand or walk or move without being in horrible screaming pain, he called a trauma Dr. She got the bal rolling and they admitted me. But sadly, I still did not get the care that I should have gotten and they just let me sit in shoulder braces for 5 days until my husband finally brought me home to take me to some good Dr’s that might help me. At the hospital I was looked at differently because I only weighed 99 lbs. I was tiny and 5 feet 5 inches tall. I had been going through Anorexia off and on since I was about 17 years old. That is another whole story in and of itself. But I was still very sane and smart and not crazy in any way, shape or form. I was not on any medications, but I had been seeing a wonderful Psychologist who was helping me makes sense of some things that had happened to me while growing up and while as an adult member of my family as well.
So after 5 days of being NOT treated kindly and NOT being diagnosed properly, my husband was so appalled at the way things were happening or NOT happening, that he took me out of there. I ended up finding out that I had suffered an MTBI and several other horribly painful injuries. After 3 years at the Ann Arbor Rehab center for TBI’s, and after 10 surgeries or so, I finally know all that went wrong and I’ve had to go through many horrible Dr’s appointment experiences but I’d finally found some help. I met a great Brain Injury Dr. at St Joe’s and he helped me every step of the way. He was not on “My” side but on the side of truth and right and goodness, which was the same side that I always try to be on! I got help dealing with the short term memory loss and the difference in my personality a bit and I learned that I was now unable to read large books such as the “Harry Potter” series, but I could read Magazine articles. I am unable to still remember things that I’ve read. But when I’ve heard the same things several times, then I surely can remember them. I ended up having 2 screws put in my left shoulder because after a year of seeing several shoulder Dr’s, they all told me that I just had some “torn rotator cuffs and then frozen shoulders”. They kept on sending me to painful PT. Later, I finally did not give up and found a Dr. to listen to me and he sent me to the Cleveland clinic. Dr. John Brems, orthopedic specialist, told me that he could do a “nerve and muscle transfer from a cadaver” but he then thought it might me just alot more pain for me and it would only have fixed one thing out of many issues for me at that time. My new shoulder Dr. though, told me that I in fact “was NOT crazy” and he had to go into my shoulder in an open surgery and unattach my biceps tendon (which had grown attached to the bone wrongly for over a year because nobody would listen to me) and reattach it to the bone with two titanium screws. It helped the nerve “zings” immediately and I was so greatful to him.
I was in the hospital for pain control when I met Dr. Bullach. He was a kind man and he had a kind manner about him. I had been seeing the other Dr. in the practice since 1986, and we got along great. But my parents decided to go to him 10 years after I’d been a patient there and they started telling hem that all that I’d told him “was a lie”. He got confused and he came to me telling me that “they seemed like nice people and I seemed like a nice person and now he did not know who to believe?” I saved him the trouble and I left the practice. Only to return when I got afraid after the car accident. I came back because they knew me and had years of my records and I was in pain and afraid. Lucky for me, there was a new Dr there and I got along great with him so I switched over to Dr. Bullach for the next 12 years. He had no problem believing in me and he talked to my other Dr’s and Psychologist and I had a great team. He always told me that he was “the eye in the middle of my storm”. I believed in him and trusted him. In 2005, after trying so many medications that all made me either very ill or I was allergic to them, he started me on the Fentanyl suckers and the patches together. It was only the 2nd time that anything had worked for my pain. With the pain Dr. I had been on a medication called “Kadian” and it was extended release Morphine. It worked for 2 years and then just stopped working. The pain dr. wanted me to get an Intrathecal pain pump. I didn’t want something else put into my body, let alone stuck into my spine dripping medication into it and being “dependant forever” on another human being to fill it. I decided to just stick to meds and therefore the pain dr stopped seeing me. He turned me over to dr. Bullach to just give me pain meds and said that he “could consult with him at any time and he would help”. That never happened because Dr. Bullach put me on the above 2 meds and I stayed on them until he left the practice in December 2014.
I had gotten a letter from the insurance company stating that they “would not be paying for my pain meds after March 2015 unless a pain dr. agreed with Dr. Bullach’s treatment plan.” Well in December, Dr Bullach got into “trouble” and left the practice to go and work at an urgent care in Jackson, MI. He wrote too many prescriptions for pain meds for too many people. He over medicated too many people and I was one of them. I had no idea because before that MVA in 2002, I never even took an Aspirin for headaches. I never had pain issues before! I had no idea what was happening or what was about to happen to me. Dr. Bullach just kept on telling me to “trust him” and “not to worry”. For the past 3 years I had asked him to help me go down from the meds i was on. I was afraid of being on too much and I was worried but he just kept on telling me that he got “me off of the hospital bed in my living room” and if and when the time came, he would help me get off of the meds. Well, the time came and I had no control over it and he was nowhere to be found to help me. I was on my own and very afraid.
I went back to the pain Dr. that helped me for the 3 years following the car accident. He was good with me and believed in me and I in him. I was compliant and did what he asked and it all was good. But when I went back to ask for help after dr. Bullach left, he didn’t want anything to do with me!!! He wanted to sell me out and he saw me one time only to tell me that I had to go to be screened by another pain Dr. friend of his! Have you ever heard of a pain Dr. not feeling confident in himself and having to send someone to a “friend of his” for a consultation? It made no sense until I heard him say that He really was “inundated with many of Dr. Bullach’s pain patients and many of them were just drug seekers and he didn’t want to be any part of that”. But he knew me? I didn’t do anything wrong? I had only always done whatever was asked of me? What did I do wrong? I needed help and nobody would help me. I was very afraid and didn’t know where to go or what to do. I knew that I did NOT want to go and see his “FRIEND” …..after looking him up online, his friend was a “Dr. Malinoff” in AnnArbor who is in “detroit hourly” magazine and who gets “awards” for being such a great doc….in print!! But from what the hundreds of people wrote about him in many many reviews, I was not about to go and see him EVER! I read up on him at his website. He even states there that he broke his own foot and didn’t even go to a Dr. for 3 months. His wife finally forced him to go and he had a broken foot. He prides himself that he walked on it all of that time without even a pain pill! He had surgery and he again prided himself on “not taking anything for pain”. He even said that If you wake up in the morning and put your feet on the floor and you don’t have pain, then you should be looking for your name in the obituaries!!! I won’t quote that because he said that his father said it and he also believed in this view. But I don’t like to quote things unless I have the exact words and I’m not 100% sure of the exact wording, but this is truly what he said on his website and you can find it for yourself just by looking him up in Ann Arbor,MI.
Now, I have always been a person who never drank or took any drugs of any kind. I was NOT going to see this Dr. who I had read about and heard about from other pain patients that I admire and trust; when what I’d heard was very bad practice. He takes peoples medications away from them and puts them on Suboxone or Methadone right away. You are not even looked at as an individual and to see what might or might not work for you. This is what I’ve heard and what I read at his website as well. I am a good person who never drank or did drugs or anything bad and there was no way I was going to be sent to this place and then to possibly be put on who knows what list and never ever be helped again in my life for the real pain issues that I have. Even the first pain Dr. agreed that “I had many big pain issues” and he was very sorry but he just couldn’t take any of Dr. Bullach’s patients on.
I persevered and I finally found a pain Dr right here in my own town. He is awesome so far and I liked him very much during my first visit to him. I will see him again in August. But he did take me off of the Fentanyl Suckers. He says they are “very dangerous and I should never have been given them”. He said they are for “end of life” and for those who do not have stomachs to swallow meds. etc. He is keeping me on the patch and he gave me a different medication for my pain and I will be starting it “cold turkey” on Monday July 13th. I’m scared as I’ve gone down from my suckers from the 20 or so that Dr. Bullach had me on and now to only 3 per day. But it’s still a scary thing when I’ve been on them for almost 12 years and they are what has worked for me. So far the new meds that I’ve been trying to start taking a little bit here and there, are not working very well. I’m feeling very sweaty and sick and nauseated and my pain is not going away at all. No break from the pain like I’m used to getting with the suckers. I’m doing it but I’m scared and in only two more days, I will wake up and only have the pills and the patches. ….no more Actiq suckers and I know I can do this but it’s so hard and it’s hard already and I’ve just gone down to a couple per day, how will I do with zero?? I guess we will all see very soon. But as soon as I do this all by myself, but still with a new pain Dr. by my side and my wonderful husband, I will be sending out a letter to the one Dr. who did take over and help me until I could find a different pain Dr. to help. Also to the other 2 Dr’s who refused to help me, they will be receiving a letter as well. One will go to Dr Bullach, because he truly hurt me by leaving and not caring about me at all…and then the pain Dr. who was going to “throw me to the wolves” and didn’t care one bit either!
Here is a copy of the letter that they will be receiving: (I will post the copy of the letter next week at the end of the week after I know the letter has been received by the appropriate Physicians). So watch for that letter, I will post it probably next weekend sometime….I look forward to you reading it…thank you so much…Please pray for me and wish me luck because I’m afraid and feeling awful sweaty and sick already as I write this blog today…sending Love, Suz
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!
I wanted to write a bit about whats happened with me and what is going on so that others like me, with Chronic pain, several Chronic pain illnesses and nerve pain Diagnosis’, don’t get treated as I’ve been treated. If I can help even one person with this post, then it will be very worth it to me . Now, the short version of my recent saga is this: I was in a MVA in 1984, hit by a drunk driver….causing whiplash and the beginning of Degenerative Disc Disease. In 2000, I fainted (unknowingly I had Dysautonomia already at that time). My husband was inpatient with Peritonitis following a burst intestine. I was running from the hospital to home and back again to make sure my husband and my two young daughters, ages 8 1/2 and 11 yrs old were cared for and felt loved. I was doing it all alone with no help from any family or friends. I was doing laundry at midnight and I was exhausted. There is a metal pole in between our washing machine and the dryer. I bent down to put the clothes into the dryer and I hit my left frontal temple on the metal pole. I felt an “icey” feeling go down my face and I fell to the floor. No other adults were home and I was in the basement, 2 floors down from my sleeping daughters. I awakened some time later but unsure of the time frame. When I awoke on the floor of my basement, I could no longer feel the left side of my face. When I smiled my left side did not; just as though I’d had Novocaine at the Dentist office. I couldn’t do anything for myself because I was alone with my 2 children and my husband was very very ill and possibly could have died and he was in the hospital. My youngest daughter was a champion Scottish Highland dancer at the time. She was being judged for “medal testing” by a judge brought in from Scotland. I paid a fee, she was very excited and had worked very hard for this chance and I could not let her down. Also, afterwards I was going to the hospital again to see my husband. I had to just make sure that I did not smile so that my girls didn’t notice my mouth going down on left side. I was a little scared and didn’t feel so great, but I drove both of my daughters to Royal oak or a bit farther, for the medal testing. My youngest was tested and did marvelously!! She was being judged for Silver medals and she got her Silver medals! It was awesome!
I brought the girls home afterwards and had a neighbor watch them while I went to see my husband. On the way to seeing my husband, I stopped in at an Urgent care to see about my face and head. Also because my eye was not looking right and it was “wandering”. The urgent care put me in an ambulance and took me to the same hospital that my husband was inpatient at. I was livid and didn’t want to go. My car was left in the parking lot and we honestly had no one to help us! What was I going to do? I was starting to get admitted and I left against medical advice. I went to my husbands room and saw him and I was in luck that another friend was visiting him at that time. She offered to take me back to my car. Later on, I went home and the next day I went to see my Physician. He sent me right away to see his Neurologist friend. I had a CT scan of my brain and an EMG. I had 4 inches of nerve damage in my left face and I had brain swelling. I was given a “Medrol dose pack” and then nothing else ever happened from that incident. The fact remains that my smile still goes down when I’m tired or sleeping. My eye wanders in most photographs taken. My face has become asymmetric because of the nerve damage. Most people cannot tell so much, but a Neurologist that I saw did notice and of course, I can see it. My husband can see it as well.
Then, in 2002, I was again a passenger in a MVA. I was unconscious for 25-30 minutes. I suffered a MTBI or “Mild Traumatic Brain Injury” and had to go to a brain injury or TBI rehab ctr for 3 yrs outpatient. I had 12 surgeries including: 2 pacemaker surgeries (different in that the first was placed deep into my pectoral muscle and then 10 yrs later it had worn a hole right through my pectoral muscle and I needed a 3 hour muscle rebuild surgery and then to replace the pacemaker….this caused so much trauma to my chest, left arm area that my RSD/CRPS went straight to that traumatized area; even though my Neuro-Cardiologist did research. He learned about doing a “Bipvucaine” internal surgical wash to head off the spread of the RSD/CRPS. He really tried but it went Systemic in 2013. I ended up having knee surgeries, shoulder surgeries (with screws put in), left facial surgery, foot surgery (where the RSD/CRPS type II started) and more. I had two torn meniscus’, two torn rotater cuffs that went into adhesive capsulitis and so much PT and OT for 8 years that it seemed endless. I ended up getting an “ENG” test which showed my Cerebellum was damaged and it was injured in a “central dysfunction”. I fell often due to balance issues and still do today. I had to have special prisms in my glasses as I see halo vision, with severe dry eye and I have a Convergence insufficiency. I had to get 2 sensory neural hearing aids also as a result of the Traumatic brain injury; due to moderate hearing loss in both ears but left worse than right. So much was different including that I went from never even taking an aspirin for a headache to having to be on a pretty good amount of medications for “chronic intractable pain”. I had no idea that I was entering a “whole new ballgame” in my life. Meaning that I was in a hospital bed in our living room for the first 3 yrs because I tried many pain medications and they all made me ill or I was allergic. I went to a pain Dr. who gave me: trigger point injections, epidural blocks,other injections, biofeedback etc…I went through their psychological testing to see what kind of personality I was or was not. I passed with “flying colors” and was told that I did not have any signs of having an “addictive personality”. I was offered an intrathecal pain pump, which is surgically placed under the rib cage near the abdomen. It is or was, the size of a hockey puck. It is something that gets filled monthly with Morphine or other kind of pain medication to keep you comfortable on a regular basis. I already had a pacemaker and did not want something like that seemingly uncomfortable appliance inside of my gut forever.
Next, I was put into the hospital for pain control in 2005. This was 3 years after that horrific car accident had changed my life so much. I met my physician’s new office physician. I thought he was a big “teddy bear type” personality and seemed very patient and kind. Being a survivor of abuse, domestic violence and suffering from PTSD and actually on SSDI partially for that reason, I needed a General Dr. with that kind of bedside manner. The other one I’d been seeing was also kind, but he was very “quick moving” and didn’t take the time listen very well. Along with the fact that he had a story for everything, and this was just not “funny”. Finally, I tried what he told me to try and it was a combination of a pain patch and a pain lozenges, which had only been approved for cancer pain and for the horrible burning pain of RSD/CRPS; which I’d been diagnosed with by 4 different Physicians. I just didn’t know what it was and didn’t want to believe it. I had never even heard of it before. Well, this combination of medications is the first thing that didn’t make me terribly ill and it got me off of the couch after 3 grueling, long years of being pretty much immobile and not really going anyplace except to the Dr’s and to the rehabilitation center for TBI rehab.
That was 2005 and now we are in 2015 and my dosage was increased now and again up and until about 2010. After such time, I never had to have another increase and my pain, though still apparent, was bearable. I was able to go shopping with a friend for awhile. I was able to go to my daughters wedding. I was even able to go to Disney World in Florida in 2012, to celebrate my youngest daughter achieving her Masters degree! Of course, we took my wheelchair and I used that for the parks, and I had a cane for looking in the smaller stores. But I could go!! I did go!! It was a dream come true; and although I was still in pain, I could feel it and it would get worse the more active I would become; I still went!! I had asked my Dr., my GP, to “help me get down on a lower dose of these Narcotic pain medications”. He kept telling me that I “don’t want to end up on the couch again or in the hospital bed”. He would tell me again and again “not to worry about it” and to “let him worry about it”. I would give up asking and go about my “half life” that I was living, though still better than living in my front room on a hospital bed. Then a few months later I would bring it up to him again. I would say “Dr. (Pete) Bullach Jr., I am afraid of being on this kind of medication for so long. How am I going to get off of it? When can I try to take less? What can we do?” Dr. Bullach Jr. would say to me again, “let me worry about it and when the time comes, I will just admit you to the regular hospital and we will knock you out for a couple of days and get you off of the meds and start with something else”. Whenever I would bring that up or ask him about “WHEN” we could do that, he again would tell me “not to worry about it” and to “let him worry about it”. He always told me that the medications that I was taking was fine for me and for the amount of pain that I was having. He told me that he even “fought it out” with the “medical director of my insurance company” and he told them I needed it and why and they accepted it. He just kept on telling me that I “didn’t want to end up on that couch again, like I had been for 3 years, or the hospital bed either.”
So …in September 2014, we got a letter from my insurance company, telling me that as of March 1st or so, they “would not pay for my pain medication any longer, unless I went to a pain Dr. and he/she agreed with my Dr. Bullach’s treatment regimen.” Of course I got frightened because I do know that if taken off of these kinds of meds quickly, I can die. So my husband and I took the letter to Dr Bullach and he told me “not to worry”, once again. He told me to make an appt. with the old pain Dr. that had seen me for the 1st 3 years following the MVA. He told me he “would speak to that pain Dr and he would send him any and all information to make this work out just fine”. I didn’t worry because he’d been my Dr. for 14 years and I trusted him! I had been to many Dr’s over the years and nobody ever told me that I should be worried! I had surgeries and no one ever told me that I was on “mega amounts” of pain medication for my body size. I made the appointment with the pain Dr. for just after Christmas this year, 2014. I also had an appointment for my regular 3 month check up with Dr. Bullach Jr., in early December, to get my scripts and talk to him. Only 2 days prior to my appointment, I received a letter in the mail. The letter was NOT from my Dr. Bullach Jr., but from the other Dr. who is the administrator of the medical center offices that I had been going to since 1986 actually! The letter stated that my Dr Bullach Jr. “was leaving on Dec 12, 2014 to go to another community and be an Urgent Care Dr.”! That was it!!! I had two days notice to tell me that a Dr. that I highly depended upon was leaving soon. I trusted him to help keep me as pain free as possible! He was the Dr. who told me to “depend on him only” and that he “was the eye in the middle of my storm”! I went to see him that last day and he said he would not write my prescriptions for the Narcotic pain meds that he’d been giving me and that he’d put me on for the past 9 years! What did he expect me to do? All I did during that whole entire visit, was to cry pretty much uncontrollably. I was frightened and I felt betrayed!! Once again by someone who I looked up to and trusted with my life! He just looked at me and sort of hugged me back when I hugged him “goodbye”. He did assure me that he “would send all of the info that was needed to that pain Dr for my appointment after Christmas. He also assured me that the other Dr. in that practice would give me the “exact same care and prescriptions and all of my medications”. He promised me that this other Dr. in the practice would take over my care and “take good care of me”. the M.A. even told me that if the other Dr didn’t write the prescriptions correctly or something was wrong or different, that she would “take him out into the hallway and tell him what to write and what to do for me”. I listened and tried to believe in them and in the Dr. I’d looked up to for so many years.
Well, I went to my pain Dr. appointment and found that a “bomb had been dropped on my treatment and care”. The “trusted” Dr. that I’d gone to for the last 14 years did not talk to the pain Dr….nor did he send him any records of any kind. If I had not brought all of my own records, the things that I did have, with me; the whole appointment would have been a sham. It pretty much was anyways. The pain Dr. told me that I do indeed have the many pain diagnosis to be on this kind of pain medication. He told me that the Federal guidelines people are not Physicians and they are not “pain people” and therefore they do not understand pain issues or the medications. But that he had to follow the federal guidelines and that I was on much too much medication. My Dr. had put my life at risk all of these years and I was “Not the only patient this was happening to”. He was pretty angry that he had to “take the fall out” from what Dr Bullach had done and then left his patients in the lurch to fend for themselves. I was left in the dark to fend for myself. The only alternative that I was given, was to go to a special Dr. in Ann Arbor, MI, who specializes in “detox”. Well, this was NOT ME! ????? I never smoked cigarettes, or pot. I never took drugs even aspirin for a headache was very rare for me. I didn’t drink and I was always a straight “A” student and really had never done anything “wrong” in my entire lifetime!
We got home and my husband first called the other Dr. in the office where Dr. Bullach, Jr. worked. HE was livid and I could hear him yelling over the phone to my husband. He was furious that he was “left with the mess that the other Dr left him with”. He was “getting rid of all of this other Dr’s patients”. He was furious for what he’d been left with, instead of being compassionate and worried for what I had been left with (and apparently others as well). There was no sound of compassion and not one ounce of empathy in his voice or his word choices. He and the pain Dr. decided to “pawn me off” to a detox Dr who has a horrible reputation if you went to “ratemymds.com” or “healthgrades” and others. He has 16 terrible, awful reviews and that is scary! THIS is NOT someone I would go and see…ME…who suffers from PTSD??? No way was I going to see that Dr.!!!! So my husband told this to the pain Dr & to the other GP in the practice where I had been going. They told him that I “dont have a choice” and that “I might die” and that I “had to go”. They told my husband that those reviews were written by “drug seekers” and “disgruntled pain patients”. Well, I just don’t think so because I looked up several other pain Dr’s including the one I was talking with and he and many others got wonderful reviews from “disgruntled pain patients” and so called “drug seekers”. Therefore this cannot be true! Lastly, the “detox” Dr. they wanted to send me to has a mission statement on his website and he has many pages of all of his awards and such! He wrote a story about how he “broke his foot and walked on it for 3 months. His wife finally forced him to go to an Orthopedic Dr. That Dr told him that when he walked North, his foot went “northwest”…..????!!!! He continued into this story telling the readers that “HE did this without a pain pill”. He was saying that if he could walk on a broken foot for 3 months and feel the pain of the “weather changes” in his foot, without any pain medications, then those who are suffering with “full body RSD/CRPS, Degenerative Disc Disease, Radiculopathy, Polyneuropathies, EDS, Rheumatoid and Osteoarthritis and more; should be able to do the same and live without any pain medications.” He said that most or all pain (cannot remember which word he chose so I will not quote on this one) is “perceived pain”. I will end it on that note.
It has been a week already. I will not be thrown into some “place” to have some brusk Dr. that I don’t know and do not trust, take away all of my control and my pain medication at the same time; while being away from my home, my comfortable atmosphere, my loving husband and my kitty cat. I can do this myself! I am doing this myself and I’ve gone down already quite a bit but I’m doing it slowly. I am a strong woman to have already beaten an eating disorder and the abuse that I’ve suffered in my lifetime. I am not crazy or bad or stupid. I am very smart and good and loving and a kind person. I don’t dwell on my pain and I do volunteer by sending kind and cheery letters to people in pain or going through terrible experiences. I do what I can to help my life be as good as it can be. I am the administrator of a support group for “invisible diseases” and we have over 850 people in our group. I know I can do this with the love of my husband and in my own home. But thank God I am strong and I am who I am because I feel terrible for the others. I found out that my old Dr., the one who left abruptly, had actually gotten into trouble for what he not only did to me but to several others. THAT is why he went to an Urgent Care in another city…and for no other reason. Please….if anyone has any good and kind advice, I will take all that I can get. Lastly, I saw my Neuro-Cardiologist this week. They told me that my upper left side RSD/CRPS has worsened because I now have Lymphoedema in my left (*worse) RSD/CRPS arm. They spoke to the Vascular Dr. (luckily my appt. was in the U of T. Medical Center/Heart & Vascular area, so a Vascular Dr. just happened to be nearby); and they gave me a prescription to order a special “compression sleeve” for that arm. The Dr. also informed me that my Atrial fibrillation has picked up, most likely due to the recent and pretty quick, drop in my pain meds. They also gave me a referral to a center in Lansing MI to get checked out for the new diagnosis of “EDS” or “Ehler Danlos Syndrome”, which they think I have because I do have 23 of the symptoms! I hope I can get an appointment in a timely manner. People with EDS do not metabolize pain medication like others do! Gee, now it’s all making more sense! But when I asked Dr. Bullach if I could possibly have EDS, he told me “no reason to get checked for it because there’s nothing they can do for it anyways”. But thats not true I’ve found out recently. Once again, I was lied to and betrayed by someone I trusted so completely. I also am making an appointment at a pain clinic where a friend of mine found. It is one in which the Dr. is compassionate or so it appears. I pray that something will happen quickly because when I went to the office that Dr. Bullach left, and saw the Dr. that I was told would “give me the same care, level of care and treatment plan”, I was given almost nothing after being on the medication for 12 years! I was left to either do what he says and go to that detox doc, the mean one with the bad reputation but who gets his name and photo in “Dr of the hour magazine” or to just fend for myself with no other help than my loving and kind husband. I will get through this and I will find a trusted Doctor once again…I just need one who wants a challenge and not one who just wants to put a “band aid” on me for everything and let me keep getting sicker and sicker right under his nose.
Thank you for reading. I appreciate any kind comments or responses or advice. But please, please be kind because I’ve honestly had enough abuse for one lifetime and more!