The Opioid Conundrum 


 


Hello Luvs,

In light of this 2016 “Pain Awareness Month” and with what happened so recently to my friend, fellow pain warrior and fellow U.S. Pain Foundation Ambassador; I feel the urge to tell a story. It’s actually two stories, hers &  mine, but they are  within the same idea and fit in this article.

So our own dear Emily was out of town doing some advocacy work and ran out of her pain medication! She takes a synthetic opioid “Tramadol”. Her Dr nor pharmacy would help her as she was miles away in so much pain that she could not drive! She tried to call in and ask if she could just “get a few meds to get her through until she returned home”. Again, the answer was “No”! She was crying and almost hysterical calling around to different places, asking for help. She knows, she said “what she must’ve sounded like” to those on the other end of the telephone! But just like me, Emily never wanted these medications! Like me, she was reluctant to start them because she never wanted to be dependent on the meds! I went through that same dilemma for 3 years, until the PMD had his pain Psychologist, talk me into it and told me “not to ever be afraid” and to “trust them”! They even tested my psychological profile, which proved that “I don’t have an addictive personality “!

I have been through this similar situation once on a trip and then again at the end of my journey with one type of pain medication.

My family and I were returning home from AZ during our February break vacation. It was about 2009 & many planes were not leaving on time or at all! I had my wheelchair, which had already been boarded onto the airplane. I was prescribed Fentanyl “lollipops” for breakthrough pain and only brought enough for the trip. Suddenly on a loud speaker, it was announced that our plane could be delayed until Wednesday or Thursday! This was Sunday at noon! Let alone the fact that my husband is a teacher and had to return to work that next day, Monday! I was frantic, afraid, hysterical and worried all in one big thought pattern!! My wheelchair was already gone onto the plane and I could be in pain for those next 3 or 4 days! I’d already lived through a heart attack and a stroke /CVA ! I would go through withdrawals! I’d feel horribly ill and possibly suffer seizures or subsequent stroke!!??? I was so afraid and finally relieved when at the last minute they told us to board the plane quickly “because the pilot & staff had to be up in the air within 10 minutes or they’d be grounded due to too many logged working hours”!! We made it home without a trauma, but I knew in my heart that I absolutely despised being “married” to these medications!!

I relented and started taking the Opioids after 3 yrs of epidural, injections, PT/OT (for 8 yrs total), biofeedback & more! I was convinced to take them and told “not to fear”! 

In 2014, I got a letter from our medical insurance company, stating that I “had to have a pain management physician agree with my General physicians treatment plan” or they’d stop paying for my medications altogether!  The very next day I had an appointment with my GP. (*side note:  after 3 + years of the misc treatments , including pain meds, my pain managemnt Dr. told me that due to my Combined immune deficiency disease, I was no longer a candidate for the Spinal Cord Stimulator or the Intrathecal Pain pump! He told me that he was “looked at under a microscope by the Federal govt.. Therefore he was “passing me over to my GP” for medications only. He said he’d consult whenever needed for ideas etc.)

I went to my scheduled appointment with my GP of 13 -14 years, the next day. I spent the entire appointment crying, while the Dr. I’d entrusted with my medical care for all of those years, blankly stared at me! He  only muttered the words “I’m leaving, today’s my last day. I want to spend more time with my kids so I’m going to work at an Urgent care!” First of all, that was very “fishy” from the start! When he became a Dr., married and later had 2 kids; he knew what he’d signed up for! 

I left and had to pay a $30 co-pay to cry for 40 minutes! Most of that time was with the M.A. Consoling me as she reaffirmed that “nothing would change”! That Dr., his nurse & his MA, told me that “the other Dr. in that practice would take over my care & nothing would change”! My ex-Dr also told me that he’d “personally speak to my old pain Dr. & get him to sign the papers for the insurance co. Not to fear”! Secondly, he said that he’d forward my treatment plan and records to that PMD, and all would be fine, and everything would stay the same!

A few weeks later, I went to see my old pain Dr and he told me that he knew that “my pain was real and that I have multiple real and high pain issues”! But that I was to go to a “treatment center “! Then afterwards I could possibly see him again. But only after I went to his “friend”! He next explained to my husband and me, that “it wasn’t me; but he wanted no part of that other Dr.’s mess!”(my old GP). He explained that my old GP had been investigated by the Feds and had to go work at an Urgent care because he was fired from that practice  & unable to write “for pain meds”any longer! I was in tears crying and begging him to take me back! I cried and through my tears, I explained that “I had never even smoked cigarettes, did never do any kind of drugs and had not drank alcohol!” I promised him that “I was strong & I could get down off of the Fentanyl lollipops all by myself, with my husbands love and support! I made an appointment with him for 2-3 weeks later and I promised him that I’d wean down by myself. He allowed me to make the appointment! 

I returned to that PMD’s office 2-3 weeks later and down off of the Fentanyl lollipops by about 70%! He had a young 17 yr. old office girl come to tell me that “he still won’t see me unless or until I see his friend, the addiction specialist” (I researched & later found out this info.)! I cried and begged for help and I was afraid! 

I visited at least 5 Pain Management physicians! All of them looked at me like either  I was a “Lepar” or my case was too difficult and they did not want to bother ! Time was drawing near when I’d be totally out of those lollipops for good. Finally, the partner, actually the owner of the GP’s practice,(who’s known me and my family since the 1980’s), told me that I’d proven to him that I could go down on my own and he’d “take me on only if I was 100% off of the lollipops AND the oral meds &/or patches that I’d been prescribed”!  I promised that I could do it. I was terrified because no one had my best interest in their heart or mind! I had no way for future pain relief and the nation was going berserk over pain management Opioids!

What happened to this nation? Why am I suddenly categorized and scrutinized? Some movie stars and magazine reporters family members had died from over dosages; therefore now I’m an “addict”!?? There’s a big difference people!!! There’s a huge personality profile difference between an addict and someone who is dependent on Opioids for several nerve pain diseases and high pain diagnosed illnesses! An “addict” craves their “fix”! They live to take  medications, whereas, I take my medications to live! The addict gets a “high” from the Narcotics or Opioids.  I wouldn’t take them if they did not relieve my high amount of nerve pain due to RSD/CRPS and other pain illnesses from A to Z!

 I did finally find a good, kind and respectful Pain management physician. He did tell me that I had to discontinue the Fentanyl lollipops if I wanted him to be my Dr. He told me to take my last one on the eve of July 12, 2015. He gave me different Opioids and he was pleased that I’d gone down by myself, to 1/2 of the amount of Fentanyl patch than what Id been on under that first GP’s care.

I took my last Fentanyl lollipop on July 12, 2015. I had to go through withdrawals even though I’d decreased the lollipops by 90%! It was a horrible, awful and painful experience that I’d never wish on my worst enemy! I needed something for my blood pressure spikes! The nausea and vomiting too! I needed meds for calming me and I just needed time to get off of them 100%! I was in pain and miserable for a good 3 weeks, then down just a notch for 3 more. It’s was scary for my husband and a nightmare for me. I thank God that I’m a very strong willed person. I did it and I came out the other side! I NEVER want to go through that again!

I never want to be dismissed and sent to an opioid treatment center because….. I did it myself! I certainly didn’t want that following me around in my medical records for the rest of my life; when I never have never been and never will be an addict!! Yes, I’m still taking an oral Opioid and 1/2 of the amount of Fentanyl patch that Id been on under that GP’s care! 

I thought he cared about me as a long term patient! I thought he was kind and that he was the best Dr ever, because he “listened” to me! Well, do you know what? That’s all he did! He listened to me & then he wrote prescriptions and stared off into space with a kind look now & again. He never tried to help me by physically “doing” something for me–except lifting a pen!  He knew how much medication I was on! He knew it was a dangerously high amount of Opiods for someone like me; No…for anyone!!  He was not doing me any favors and he was digging me an early grave! He  didn’t care at all for my husband, daughters & granddaughters; my family or my life.

What happened when my ex-GP got in trouble and left, was a blessing in disguise. Yes, I had to go through a lot to get where I am today! I’m thankful that I have God in my life and that I’m a strong person. I thank God that I had my husband there by my side to help me through it all! I also thank God that I am here today and that I can tell my story. I only pray that my writing &  my story will help someone else in the future.

It’s because of Doctors like my ex- GP, Dr Bullach, who didn’t truly care about curing or attempting to fix medical problems and/or pain; but who only wrote prescriptions. Also then due to the actions of some celebrities like Prince, Michael Jackson and the others that abused medicines for pain; that we are in this situation today. Also the “regular non celebrity people” that abuse, modify & sell these opiods.  It is all of them who’ve ruined it for all of us. We are the faces of the people who are dedicated to getting well and trying to live some semblance of a life. All the while we are also struggling with the management of our high pain illnesses. We fight against labels and against those physicians involved in the group called “PROP (Physicians for Responsible Opioid Prescribing)”, and others in the medical profession who give us these labels!

Lastly, I need to say one more thing while Im on my “soapbox”. If someone who you loved died from an overdose, I send you my most sincere condolences. But because of your anger, loss and fear; please don’t take it out on the people who are diligent in taking these medications responsibly?! Please don’t pull the rug out from under my life, our lives because you are mourning. Maybe you feel that you must right a wrong!  Please everyone, do not put all of us into the same category as those who abuse illegal substances! Most importantly, if you are in a position of being a reporter or news writer or Television newscaster, please don’t abuse your privileges by using your job as a stage for fighting against your own personal demons!

-References: Emily’s story from U.S. Pain Foundation website at: USPainFoundation.org (originally from Rep-ap.com article: “Side effect of drug fight means some are left to suffer”)

-Feature photo is originally from: USPainFoundation.org


The War On Pain Meds: What Happened to “DO NO HARM”?


 Ok, now I’m really starting to “get it” into my head about this “war on pain meds” issue. My General Practitioner or my “GP” left abruptly, last December 2014. He had been investigated for prescribing waaay too many pain meds to the good, the bad, the pained and the seekers!  It’s Dr’s like, Dr. Peter Bullach, Jr. MD, who “hurt” all of us! Now, because of him and others like him, I’m scrambling and trying to find someone to help me with my own pain “HELL”. My body in a Hell of its own, due to Chronic Intractable pain. I have enough pain issues to be on the Opiod medications. I suffered first from a MVA in 2002 and following that accident I had several, or up to approximately 10 surgeries! I have screws in my shoulder, my jaw and have had 2 pacemakers. The first one wore a hole right through my pectoral muscle and in 2013, when the Neuro-Cardiologist, went in during surgery to replace it, he found a mess! He had to call other Dr’s and they researched my RSD/CRPS first. They even did an internal wash inside of my surgical area. They used a medication called “Bipvucaine” to try and head off a spread of the pain disease called “RSD/CRPS”; which I now have “systemic”  or in my whole body. My whole pectoral muscle had to be repaired and remade by a plastic surgeon and others. My heart literally stopped, the Dr. told my husband afterwards; when they took out my old pacemaker and before they replaced the new one. I had 2 torn rotator cuffs, with then two sides of Adhesive Capsulitis! I had 8 years of PT/OT and had torn Meniscus, a parrot beak tear that kept getting stuck in the joint!  Because I have a pacemaker, I was not allowed to have MRI’s and instead I was tortured! Yes, the Orthopedic surgeon would not do any surgeries without “seeing” inside first. I guess a CT scan isn’t good enough? So I had to endure the the old Barbaric & horrific torture of “CT Arthrograms” and I had to have “FOUR/4” of them!! Yes, I said  FOUR of them! I had one in each shoulder and one in each knee. In fact, the day I had the first knee CT Arthrogram done, the technician had given me several numbing shots of lidocaine and then I said “owwww it really is still hurting, I can feel it”…so he said to me “Well….do you want to come back a different day?”   What the hell??? Really?? After poking my sore….no, very extremely injured and sore knees, did he really think I was going to “come another day again”?? OMGosh, I was so furious and I cried so many tears that day, most of them on the inside. It was barbaric and then I was totally believed because they could “SEE” my pain. Then the surgeries started happening. On a side note, I suffered a MTBI and had to go to “brain injury rehab” in Ann Arbor, MI for 3 years following that car accident as well!  The TBI is a whole story in and of itself for another day. Today we are talking about real, true pain that nobody else can feel except for those who have it! So to finish off my introduction here, I want to also let you know that during the first year following the car accident I saw about 10 different shoulder surgeons. ALLLLL of them were pretty rude and thought I just had “too much wrong with me to be real”. They either “blew me off” or offered me MORE PT or like this one Dr from Beaumont Hospital said….I’ll never forget his name, either…”Dr. Roland Brandt”(orthopedic surgeon)….he said to me “What part of “I CANNOT FIX YOUR SHOULDER!!!!!” Dont you understand??? Is is YOUR BRAIN INJURY?”  I was mortified and “ran” as well as I could run wearing 2 AFO’s on my legs with a walker to walk with assistance! My driver from the transportation company, who was hired by auto ins. to take me to all of my medical appointments, felt just awful! He couldn’t believe when I told him why I was crying and what had happened. The girls in Dr Brandt’s office had looks on their faces as though they couldn’t believe what they’d just heard either!! What a bad man!! What happened to “DO NO HARM”???

Life went on like that, until I saw Dr. Jeff Michaelson, MD, an orthopedic shoulder surgeon at Providence Hospital. He took one “poke” at my left shoulder and knew exactly what was wrong! He sent me to the Cleveland clinic to be seen by Dr. John Brems in Ortho there. He was so kind and he felt bad for all of my injuries. He knew I was in great pain. He offered to do a “nerve, muscle cadaver transfer” surgery on my right long thoracic nerve/winged scapula injury. He later said that I had “so many pain injuries/issues, that it’s not worth it to put me through more pain and recovery of a big surgery like that, when it would only fix one thing”!  He then agreed with Dr. Michaelson about my left shoulder. He said that I was correct and “something was definitely wrong!”  My left Biceps tendon had ruptured during the car accident and after a year of seeing shoulder Dr after Shoulder Dr. with nobody willing to help me, or even try; I finally was validated!  Dr. Michaelson did a surgery where he had to detach my biceps tendon, because it had grown onto the bone wrong for a whole year! He then had to reattach it with 2 titanium permanent screws! Guess what? He fixed one problem! No more “nerve zings” down my left arm! No more screams when I reach my arm out for something! He was awesome and sometimes it takes 10 Dr’s or 20 before you find someone that treats you with respect and who will help you! Don’t give up!

I had many surgeries and I went to the pain Dr. for Epidural injections, nerve blocks, trigger point injections and I did everything I was told and asked to do. I was told that I did not  have “an addictive personality”.  I was tested Psychologically by the shrinks at the pain Dr’s own office.  I went through “Biofeedback” even though I sort of new that was not going to be a strong point for me, with my personality. I’m not a very calm person really. It’s very hard for me as I suffer from PTSD and actually got put on SSDI in 1998 for that. I have a great Psychologist and he just says that he is surprised that I’m “not dead or crazy with all I’ve been through”. The SSDI office also spoke to him and my husband telling them that I am “the worst case of childhood abuse and trauma they’d seen in the past 36 years!” I was approved first try! Things got worse though instead of better.  The pain Dr. offered me an Intrathecal pain pump in 2005 after 3 yrs of trying different meds (some that worked for 2 yrs!), doing all of his treatments, shots, blocks etc. Auto insurance did not want to pay for a lifetime of a pain pump and they told me and the Dr. “NO”! I was willing to do the “trials”. My auto case was through “catastrophic claims” but still they wanted me to go through the agony of 6 more IME’s (independant medical exams by “hack” guys who call themselves “Dr’s” but I take that very lightly! They were horrible and bad people! Not a one was a good person and I had to fight for everything and I won every time! I fought for my auto case and never had to go to court and I won! So why did they give me so much trouble?? They knew I was a “LIFER” and going to cost them too much money. I never even took Aspirin when I had a headache prior to this accident!! In the end, the pain Dr. turned me over to my G.P. and told me “He will take care of your pain meds because I am looked at through a microscope!” …He told me that Dr. Bullach would be prescribing my pain meds and if he had any concerns or questions, he could consult with the pain Dr. and he’d help.

Little did I know they never spoke about me again. My GP just kept on prescribing pain meds which all made me ill or I was allergic until I found the Fentanyl patch and the Losenges. I think I told you previously in another post that I’d been on a hospital bed in my living room for awhile. Finally, we found that the patches and the Break-Thru  pain “suckers” worked together well. Then I had my “rescue” meds for severe pain to keep me from going to the ER. I rarely take these as I have to and have had to make sure that something would still work for severe pain, or acute pain following an injury again or a surgery. I’ve done very well in that the “rescue” meds get thrown away, down the toilet, when I don’t finish them in over a year!  I had gotten the script for those only annually and was very careful to only take them in emergent situations. I just read an article last night (wish I could find it again, sorry…if I do before completing this writing; I will share it with you) that was about how the best way to handle medications with the kind of horrible chronic pain that I have is exactly the way I was taking them. But I’ve been on these meds since 2005. Prior to that time, as I stated above, I had tried different methods to help diminish the pain.  I had gone through with different shots, treatments,nerve blocks etc. from the pain Dr. between 2002-2005.  I had a mild heart attack in May 2005 and then I acquired Atrial Fibrillation. A few months later I was prescribed and then started wearing the Fentanyl pain patch, which was something that finally helped my pain. Along with the transdermal patch, I was given the losenges for BT pain. The dose was raised every so often and since 2010 I’d been on the same medication amount for the rest of the years up until December 2014, when my GP left abruptly.

I was told by him personally, that he was leaving to “spend more time with his kids”. I’m pretty sure that most Dr’s know the work and time involved and he was already a Dr. when he married and had his 2 sons. He told me during my last appointment with him, that it would be my final time seeing him and he was going to an Urgent care. Thus meaning that none of his patients could “follow him”.  He told me that his partner would take over my care exactly the same as he’d been doing it. He told me that “nothing would change” and “it’d be OK”. He also told me he would send my records  and a nice long letter to the pain Dr. and he said he would “personally call the pain Dr.”. Neither of which he did for me in the end! But I’ve already spoken of the betrayal I felt and the fear and the unknown’s that were keeping me up even more at night.

I went to the pain Dr. appointment in January 2015, blindly being trusting & naive. He saw me one time and smiled and lied to my face. He blatantly told me that I “had more than enough terribly painful diagnosis’ to be on this kind of medication regimen. He told my husband and I all about what “really” happened to Dr. Bullach. He told us about how he had “gotten in trouble”. He told us about how Dr. Bullach had been “overmedicating” many patients and including me! Like I’ve said before; I am a “lay” person and never even took Aspirin for headaches or anything before this happened to me. That pain Dr. said that he’d see me but he wanted me to go and see a “buddy” of his also another pain Dr.! But why?  No one’s ever heard of a pain Dr. having his patients “screened” by another. Besides, he’d known me for 3 years in the past. It’d been about 10 years or so, therefore technically I was considered a “new” patient. He had my records from those past 3 years of treating with him! I was compliant and a good patient. I did everything he asked of me.  His Psychologist and Psychiatrist told him in a letter (*which I have in my possession), that I “do not have an addictive personality”. Also, I am a very “motivated” person when I get my mind set on something, I do it! So, then the 2nd appointment that I tried to go to for this pain Dr. I went to check in and the girl said to me “the Dr. wont see you”. He didn’t want any of Dr Bullach’s “throwbacks”!  Nobody wanted us! Not him and not Dr Bullach’s ex partner’s either!  Most of Dr Bullach’s pain patients, “got the boot”! I have heard stories that many were given their pain meds and told “to leave and not ever come back”!  That’s so scary and so sad. I became afraid when I found out my Dr of 12 years was leaving and I started trying to go down slowly, ever so slowly off of my meds. I had asked him for the last 3 years to help me go down off of some of the meds because my husband and I felt that maybe I was on too much. We felt that way because although it’s true that I have a TBI and a balance disorder, I fell quite often. I fell 6 times or more in 2014 and suffered 6 concussions. I just was feeling a weird all over kind of pain and I couldn’t ever sleep, which was worsening. I wanted to at least try to go down. He kept telling me that I “had a life now” and that I “wasn’t on the hospital bed anymore. I listened to him and then I’d mention it again. We both were like broken records. He did say that when the time came and he decided to take me down off of them, that he’d “put me into the ICU and watch me and sedate me and I wouldn’t know or feel any discomfort and it’d be over quickly”. He just repeated to me to “let him worry about it”! So finally, I stopped bothering him about it and just trusted him.

Well, the time has come and I’ve had to do it for myself, because his partner didn’t and doesn’t really want me as his patient. He doesn’t want any of Dr Bullach’s “pain patients,(*also called ” drug seekers” etc”). He has been helping me by getting me lower and lower dosages. I am very grateful for his help. He agreed to see me only because I’d gone down about 50% from the 1st to the 2nd time I saw him. Now I am down by 85%. He said I am “motivated”, otherwise he would not be seeing me for this either. I went down on my own. I’ve been feeling pretty vulnerable, afraid and alone.

Remember that I had had a heart attack, Atrial fibrillation and many other issues? Well, now I must go to see a GP, who doesn’t really like me nor want me as his patient. “It’s too much work”, he’s been saying for these past 5 months. He confessed that he “doesn’t know much about RSD/CRPS” and that I need to find a pain Dr. so he can “hang his hat” on that Dr’ instead of having the pain meds go through him.

He’s afraid because the government has made all of the Dr’s afraid!  So now, just as with Gun control, the bad guys can still get their guns &/or drugs but the good guys who are true pain patients, are being put through horrible treatment and being made to feel like we are “criminals” or something!  He says that he “hates the paperwork” and that he “hates having to do this for many many patients throughout his day now. He complains at every 3 week visit about how “the other Dr. left him with a mess to clean up”! He’s very very angry. He tells my husband and me that He is “awake and at work until 11:30 pm and then back at the hospital to do “the old Dr’s patient rounds” at 3:00 am. He tells us how he has over 300 phone calls per night to make. He had me in tears feeling sorry for him! He reiterates these things at each and every appointment.  I suggested that he get or hire a nurse to make phone calls or someone to help him. Then he explained that “HE NEEDS THE MONEY”!!!  He complained about the new part time Dr. that he hired and how she “makes so many mistakes daily and cannot see enough patients”. He says “she is costing him $1,000 per day in pay and then $500 in problems come out of it!”  Now remember, this is supposed to be my appointment that is costing $120.00 per visit (luckily, I have a lesser co-pay but that is the cost). I walk out crying every time I see him. But I feel “married” to these pain meds because nothing else has ever worked for very long. (**I’m either allergic or have horrible reactions, along with the fact that I suffer from “Long QT syndrome” which is another story for another day. But in short, it is a heart issue that makes me unable to take  many different medications or I could suffer “sudden cardiac death”).

I had to reduce the amount of my pain meds by 80% to feel the real results. I’m at the approved FDA  level now and it’s been several weeks and it still feels a little bit low. For a short time when I was just taking a wee bit more of the BT meds, I was able to be a little more active.. I hate this! I hate it so much!  I know that I can die if I just stop taking them or if a Dr. decides to stop prescribing them to me all at once.  I’ve seen it written in little articles and blurbs online etc. where Physicians have actually said “I will just stop prescribing them and the patient just goes through withdrawals. It’s not that bad.”  Well, from what I’ve heard it’s very very dangerous (aside from being torturous) and even more dangerous for me, being that I’ve already suffered a CVA in ’06 and a heart attack in ’05! So I feel “stuck”!  I’ve had medical professionals talk down to me, treat me with disdain and for what reason?  I’ve done nothing to hurt anyone? As far as the GP goes, the one who took over when my GP of the past 12 years just up and left, …well, I did not “leave him with the mess” or anything of a sort! I’m an innocent pain patient in need of some TLC and some medical help probably forever. Since my old Doc left, I’ve not had anything checked. The nurse sometimes will take my BP but when the Doc comes in and for example, my last appointment it was 146/95….he said nothing! He never asks me how I am feeling. He never checks anything, or even listens to my heart or lungs! He doesn’t look in my mouth, feel my neck or look in my eyes or ears! I’ve not had any Dr. check anything actually in a long time! I don’t think anything has been checked since my heart surgery in 2013. He gets out a script pad, writes the script for a whole 23 days of the medication and we do it all over again in 3 weeks. It’s torturous and horrible and I feel so helpless! I’m a lay person and even as such, I would think that at each appointment, with my health history, I should be at least looked at, “listened to” and possibly just feel cared about a little bit even??

Ok, so everything isn’t about me. I’ve learned that already and I learned it early on in life to say the least. This is not my problem!  This is not even just my story! This is the problem and the story for each and every pain patient out there right now in the USA; since things have been turned upside down and inside out with this “war on prescription pain meds”. It feels like they decided to choose one of the most vulnerable groups of people; people who cry before putting their feet on the ground as they get up each and every day, like I do! WE are strong people YES! But we are vulnerable and in such great pain and we need your help. Everyone needs to contact their government officials and ask for this to be changed. What happened to the Hippocratic Oath that says  Dr’s should first “Do No Harm”?? They are doing harm! The worst thing that is true about it is that the bad people still can get what they need. They don’t care and they get it however they get it and I don’t even want to know about it. The point is that the bad guys always get it!!! The good guys who are hurting and who don’t do anything wrong and who have not ever asked for this lot in their lives….we don’t get what we need! I am a good person! I was a single mom and worked full time and I went to College! I had and have 2 daughters and when they were young I did everything for them and I was available for them but I still worked and took care of them. I worked hard and I got hurt through no fault of my own….not even from my own actions.  Why do the bad guys always win? Somewhere it’s just not fair!

In the past decades, I thought pain care was getting better. The Doctors seemed to be listening to us and trying to help us. What has happened is that in the past, people were given “power” when they could feel well and do things for themselves. They could work and put “bread” on the table for their families. What is happening today is that “THEY” are taking all the power away from us. As we are losing access to pain meds that work for long term chronic pain diseases, then more people go on disability and suicides increase! Don’t “THEY” know this? I know that I wanted to write that “our” freedoms are being taken away. But Its more personal than that! I feel that my own freedoms are being taken away because now I can only do something semi active for about one hour to possibly two at best and then I’m at home in my “lazy boy” chair until I try to go to bed at about 11:00 pm…but then I lay awake and go back to watching TV or writing or going on my computer because of the pain, I am unable to sleep! Hey, I cannot even take something to help the pain at night because I had to use it during the day so that I could be a real grandma, a fun grandma and not a grandma that sits and cries because she is unable to participate in any aspect of normal daily life due to pain, constant gnawing, deep aching, burning pain 24/7/365 !!

There are over 160 million patients in the USA being treated for some form of chronic pain. That could be a lot of voices and help if only everyone would try to help.(paincareislegal.com /this information is from an online article by them and anything that is ** from their words and not my own)…

**Here are some ways that you can really make a difference and help:

1. Call your Senator. Get the word out to law makers to help reign in the DEA to help our issue attract public notice (Paincareislegal.com)..

.2. File an ADA Complaint.  If you are disabled and a Pharmacy refuses to fill your prescription it could be an ADA violation.

It just appears that the DEA has become overzealous in their fight against Narcotic pain relievers and they are harming the pain patients! We are the exact persons that these medications were designed to help!  Oh My Gosh, they maintain that they are only trying to prevent diversion of the meds to “drug dealers and drug abusers and that any issues are the fault of the pharmacies and doctors”. This is absolutely untrue! What’s happening is this:

**Each day it gets harder to fill legitimate prescriptions for law abiding pain patients

**Every day there are new insurance rules, new pharmacy rules and new doctor rules supposedly     aimed at preventing divergence that make it harder on the patient.

**Each day more pharmacies, and doctors are being forced out of business for minor infractions and rule technicalities by the DEA.

**Every day the DEA is pushing us towards feeling like or becoming criminals instead of the other way around! (*this info is from PAINCAREISLEGAL.com)

You can also help by writing a letter to the DEA (this letter is a form letter but you may use it and add your name. It is from the “Paincareislegal.com website):  Dear DEA,  Please end this war on pain patients. Patients with a legitimate need for pain medication are unable to fill their prescription due to the overwhelming rules and pressure you, the DEA, are placing upon pharmacists, doctors and manufacturers.

Please visit paincareislegal.com to find out what more you can do to resolve this health care crisis.

I found a little more information from “Paincareislegal.com” and here is what they are saying (I also double checked up on them and they are legitimate, no joke. Just real genuine fear and care for what is happening to us.)  …Here are a few more things that WE can do as patients:

1.  Sign the “Paincareislegal.com” White house petition. If they get 100,000 signatures the white house will personally address this very important issue.

2.  Call your Senator:  Getting the word out to law makers to help reign in the DEA to help our issue attract public notice. I strongly recommend you call instead of sending email. But if you are not comfortable making a call, you will find email forms at these links as well.

3.  File an ADA Complaint.  If you are disabled and a pharmacy refuses to fill your presription it could be an ADA violation.To file a complaint with the ADA you can go to the PAINCAREISLEGAL.com website and tehy have all of the #’s and emails available.

4.  File a State Boards of Pharmacy Complaint. The permit holder/store owner, the pharmacist in charge, the pharmacist who refuses to fill a prescription, and the wholesaler are all licensed by their state’s Board of Pharmacy.  A complaint for unprofessional conduct can be filed against each with the appropriate Board of Pharmacy for refusing to fill your valid prescription.

5. Call or write your major drug wholesaler. Many of the current shortages are caused by wholesalers rationing the amounts a pharmacy can purchase. Call and let them know how you are being affected by their rationing.

A.  McKesson Corporate Headquarters:   One Post Street San Francisco, CA 94104 and ph#:     415-983-8300

B.  Cardinal Health:  7000 Cardinal Place, Dublin, OH  43017, ph# 614-757-5000

C. AmerisourceBergen Corp:  P.O. Box 959, Valley Forge, PA  19482, PH#  610-727-7000

I am not an employee or any spokesperson for the Paincareislegal.com company or website or anything like that. I just found it and read it and wanted to share a bit of their info with you. You can decide for yourself what you think ,feel and what you do or do not want to do.

It just upsets me that the AMA is on the side of the pain patient, it seems. But the DEA  talks about how they are just trying to get these specific meds out of the wrong hands, such as drug dealers and drug abusers.  They just blame the pharmacies and the doctors. I do not feel that this is true. Every day since this whole “war” started, it gets harder and harder for me to get my prescriptions filled.  Many other patients with the same horrible chronic nerve pain and other pain, are having the same issues. I keep seeing new rules and new insurance rules, Dr’s and pharmacy’s rules.  The rules are supposedly to keep drugs out of the hands of the drug abusers and dealers but all that is happening is that we, who’s bodies are weak and feeling the horrible pain, are being abused by this system. The “bad guys” find ways to get what they need and what they want. But we suffer because we follow the rules and laws and want to be good people.

There are so many websites and news articles that talk about these things. Please educate yourself, make yourself heard. Find these sites and read them and get your voice heard!  Make a Facebook group or page to help you round up sympathizers, people who feel the same as we do. Suggest meetings and support groups and please help us “fix” what has recently started to kill the world of those of us in horrible, terrible chronic pain that is forever. We want to have at least some kind of a semblance of life. I want to hold my grandchildren for more than just a few moments without being in pain all day. Please help where you can! Get your voice heard as well! Thanks!

Remember the Hippocratic Oath: “First Do No Harm”!!

Protected: A Shorter Version Of “My Chronic Pain/ RSD-CRPS Journey”…..


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My Chronic Pain Journey – Suzanne


I was 1st Dx with PTSD 1998. I was in a MVA in 2002, a guy ran a red light! I suffered multiple injuries (*including an MTBI with 3 yrs of MTBI rehabilitation) and surgeries. I had a pacemaker placed twice as the 1st one wore a hole through my pectoral muscle in 10 yrs! Then in 2007, after foot surgery I was Dx with RSD/CRPS OF RIGHT FOOT! I got 2nd opinion & it was confirmed by orthopedic foot Dr. Then after my 2nd pacemaker surgery in 2013, my RSD/CRPS spread to Systemic! I have Long QT, A-Fib, Chiari I Malformation, Dysautonomia/POTS, RA & OA & Immune deficiency disease! So much pain & my Dr helped me control it with pain med’s for 12 yrs! Little did I know I was being over medicated! So were many of his other pain patients! He got in trouble & federal marshals came & he ran to leave his practice & went to urgent care in Jackson, MI! Now I am being taken off of my pain med’s & ins co. Won’t pay & Drs don’t want to be bothered with all the paperwork & rules! I’m afraid that I’ll be stuck to my “lazy boy” chair &/or my bed again! I feel so betrayed by Dr Bullach as he promised to send my history/records to the pain Dr & he promised to call and he did nothing! He left the practice and did nothing!! He never called. He never sent any records as he promised that he would do. I feel so betrayed and so lied to by him….it’s been horrible.

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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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Trust Betrayed!! (*When The Dr. Betrays The Patient)


4b275fd59724c74cea37eb5be066c348determination-quotes-2Which Pain Is Worse? The Physical or the Betrayal?

canandwill

Hello Luvs,

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!

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