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


Withdrawals From Actiq…..3 Weeks Later….For CRPS/Systemic


woman-in-opiate-withdrawal10405642_843657582388305_493861174585575482_n

“Why give up everything for one thing when you can give up one thing for everything”……Unknown

Hello Luvs,

Wow…it has now been 3 weeks (*tomorrow….On Monday, Aug 3, 2015), since I went  from 5 Fentanyl “Actiq” Lollipops per day (Plus the long lasting Fentanyl patch that I still continue to wear and to change every 48 hours), to zero Actiq lollipops for Breakthrough pain per day. I went to bed on the 12th of July taking my last “sucker” for pain and I woke up being unable, not allowed  to take another. The first day wasn’t as bad as I thought it would be. I am suspecting that was because I still had residuals left in my system.  By the end of the first night, I started feeling pretty ill. The second day was wasn’t so bad and the 3,4th, and 5th days were the worst.  I can tell you that it feels like the very worst flu that I’ve ever had. It includes: vomiting, diarrhea, chills, awful sweats and all I wanted to do was lay on my couch, bed or “Lazy Boy” chair. I am sometimes hungry, but when I eat, my stomach hurts. I feel bloated and nothing sounds good to eat and even drinking doesn’t sound good. I used to love my hot tea, my coffee and diet pepsi and none of that even sounds good to me now.  Nothing is the same and now it’s been 3 weeks!

We called the Dr. about 5 days into this and told him how awful I’d been feeling. I did a lot of research, went onto forums for withdrawals and such. I found out that there are a few different meds that can help through the hardest days at the beginning especially. The first one is a blood pressure medication called “Catapres” also called “Clonodine”. There is an anti-anxiey /anti-panic attack type of drug called “Klonopin” that can also help with the withdrawal and flu-like symptoms. Then another thing that can help are the medications that are for anxiety, such as: Ativan, Xanax or even Valium. You don’t need to take them for a long time but just long enough to help you through a hard time. If you find yourself in this kind of situation, please research online forums, use “google” to look up information on withdrawals and then check out “You Tube” videos online about withdrawals too!  My Dr. gave me the Catapress and I took it for about 2 weeks and it helped very much with the symptoms of chills, sweats etc. That is driving me crazy! The chills and sweats are getting lesser and less often but the knee dropping fatigue just won’t stop!

So now I’m actually finishing the 3rd week of not taking the one thing that actually worked for my pain.  The Fentanyl Lollipops helped me and though I never should’ve been given the large amount that Dr. Bullach had given me, I felt so much better when I was down and got myself down to the FDA approved amount. I don’t understand  at all why I have to go through the pain of the withdrawals from something that helped my pain the most and did not upset my GI tract. I now remember and cannot believe that I didn’t remember when the pain Dr. asked me “do you have stomach issues? Why are you taking the lollipops in the first place?” I told him that I didn’t have issues with my stomach and due to my MTBI I forget certain things. I remember now that Dr. Bullach had written a “book” for the Insurance company about me and why I needed to take Actiq losenges or lollipops because of the numerous different meds that I tried with horrible GI side effects or allergic reactions. I had forgotten all about that until I started taking Dilauded on a daily basis. It’s ripping up my stomach!

It’s been 3 weeks and I cry often and feel very depressed. I’m not ever very hungry and I’ve not lost any weight! How crazy is that? I feel nauseous and my stomach down in my lower intestines, feels bloated and hurts every time I eat something! Nothing sounds good and nothing much tastes very good. I’m going to the pain Dr. this week and I need to talk to him and tell him everything. But I just really don’t want to try a bunch of other medications that might make my stomach worse or have even worse side effects. The one side effect that I cannot handle is “weight gain”. I already feel much to heavy now and I cannot afford to gain an ounce. I used to have Anorexia since I was about 13 yrs old and I fought in on and off until I was in that car accident . I will only say one thing about the eating disorder, and that happened because of things ….no….”Abuse” that happened in my home growing up. My kidneys and tubules from my kidneys are too small according to the Ultrasound that the Nephrologist did several years ago following my episode of acute renal failure in 1994. I’ve been on SSDI for Chronic Kidney Disease Stage II and Complex PTSD. To make a very long story, very very short, my heart and my kidneys have medical issues due to me being starved and poisoned with syrup of Ipecac during my childhood. I have seen my pediatrician records, shot records etc.; my dad gave them to me after my mom died and I don’t think he knew what they said!  They are written all over by the pediatrician. It says “Feed this baby”!  “This baby is Anemic! Give her Iron”….then the Dr. wrote some instructions with names of baby foods and formulas with iron etc. So ….lastly, regarding this subject, I do have stomach issues and when I was terribly Anemic in 1999, 2000, 2001; I had 3 blood transfusions!!! They didn’t work and the Hemoglobin was at 8. when I had the last one! So I visited a Hematologist and he gave me an IV infusion of something that helped and my Anemia has been much better since 2002!!!

Since that awful car accident on 8-11-02, and all of the chronic intractable pain, the surgeries and the horrible pain following the surgeries; I just didn’t care anymore about how much I weighed. The numbers didn’t matter any longer! I needed to eat to help myself feel less pain, take medications to help with the ongoing pain following that accident.!!! I slowly started gaining weight as at the time of the MVA, I only weighed about 90 pounds and I am 5’5” tall! Slowly I allowed myself the nourishment to “fix” or help “fix” my pained and broken body. I’ve gotten up to about 145 lbs now and to me, that is too much. For a long time I didn’t weigh myself because as long as I could wear a size 6, I felt OK with myself. I can still wear a “misses” size 6 in relaxed jeans but I feel very big now because I need to use a cane, a wheelchair at times and even a walker. I don’t exercise because I get out of breath and in too much pain and am unable to do much of anything. The CRPS started in 2007 in my right foot following a surgery. It spread to both feet and my knees as well. Now it is full body  “systemic” and I cannot even walk more than just a few minutes, like 20 minutes I suppose. Some days a little more and other days a little less. I’m trying not to worry about that, the “numbers” game, but it’s really scaring me because for the past 3 weeks now, I’ve had a very hard time eating anything much at all and I have not lost but 3 pounds. My Lymphedema in my left arm from the CRPS on my whole left side internally, doesn’t help with that because I get a lot of edema! My feet, legs and arms swell. I’m pretty much miserable!

I didn’t mean to go there. I wasn’t planning on talking about the Anorexia. But I am proud of myself for a few reasons. I have cured myself of the Anorexia (although I will always have the food fears and I will always have the distorted body image and thoughts that go with it all. But I will not ever be acting on those fears and thoughts again, for life and death reasons because I love my husband, kids and grandkids much more than I care about those numbers! I always did but I felt too “out of control” and controlled by my fears of food way back when!

Ok…..so back to these past few weeks…..this has been the hardest or one of the top few hardest things that I’ve ever done. I asked the Dr. who took over for Dr. Bullach,(**and got me through by prescribing lower and lower doses of the meds that would’ve and could’ve killed me if he had not done that for me) if he was “proud of me” for stopping the Fentanyl lollipops?  I asked him also if he liked the letter that I wrote to him, Dr. Bullach and Dr. Dobritt, the old pain Dr.?  He smiled and said that his Office employees were impressed and he left it at that. I could see it in his face and his eyes. His demeanor was very different this past visit, with my being off of that prescription now  and him not having to write it for me any longer. He is relieved and I do feel that he is very happy for me and proud of me. That shouldn’t really matter to me but it does make me feel good that I did and am doing and have done something very very difficult that even some of the strongest willed people might not have been able to do!! But I’ve done it and i’m doing it!!

After having said all that I’ve said, now I’d like to really say that I’ve been going through “HELL” this past 3 weeks. I don’t want to live like this with my stomach feeling all ripped up. My headaches and neck aches, which are in the back of my head and neck, most likely from the “Chiari I malformation”, have been a daily occurrence and they aren’t going away! I was off of  my Ativan for a year and now I’m back on that several time daily to help with the Dilauded side effects.  I could take the Dilauded when it was just an “emergency” medication that I used to keep out of the E.R. or it was used following surgeries. You must remember that I also had my “suckers” at that or during those times as well. My husband has had to set his alarm for 6:00 am each morning to get up and get me a Dilauded and an Ativan , just so that I am able to get out of bed an hour or two later! I used to take a Fentanyl Lollipop which was waiting in my bedside table drawer. I could open it, take it and lay in bed for about 1/2 hour and then I was able to get up. Now I have to plan it like a 2 hour ordeal. If we forget then we or I cannot even get out of bed. I do have GI issues obviously from all that my stomach has been through. Im actually surprised its not worse. I do have to have Colonoscopies every 5 years also, because of my mom’s death from colon cancer in Dec 2002. For some reason, the lollipops don’t upset my stomach or bother me in any way. I have had no side effects! I’ve honestly tried so many other pain meds that all had terrible side effects and worse! I don’t think I’ll be able to go back on the lollipops now! I’m not sure I would if I could, now that I’ve gone through the withdrawals and illness that goes with that.!! I honestly don’t know what to ask for or try? I did have something called Kadian (*extended slow release Morphine) that worked for a few or 2 years and suddenly stopped working for me. I also have something called “LONG QT syndrome”, which affects my heart and there are hundreds of meds that I cannot have due to this condition, that has only one symptom; which is “sudden cardiac death”.

Now I’m going to share with you, some research that I got from some of the websites that are the companies that make these Fentanyl lollipops called “Actiq”. I also want to share that many people have lost and do lose their teeth because of these lollipops with 8 grams of sugar in each one. The way that you get the medication to work is by placing the lollipop between my gum and my cheek. You have to pretty much keep it there twirling it loosly for 15 minutes in order to get the appropriate amount of medication. My Dentist was wonderful and thought ahead for my safety and comfort. He made special trays that molded to my teeth. I then put a flouride paste into these trays, put them into my mouth, covering all of my teeth for about 5 minutes several times per week! I had only one or two cavities since 2005, when I actually started the suckers. They were very old and needed new fillings. I tried hard to take every precaution.

I honestly don’t see why I had to have something taken from me that I was being very responsible with and doing very well with while taking them??? I only always followed my physician’s rules and advice! These past 3 years I had asked him several times if he would “help me go down off of them and take less”. He always told me that “Suzanne, I got you out of that hospital bed in the living room! I got you to be able to get up, go out sometimes and have a bit more of a life!” He was right, so I stopped bothering him. He told me to “trust him” and so I did. Here are a few of the things that I found on the website for the Fentanyl “Actiq” Lolllipops for BT pain:   “Actiq achieved off-label status as a powerful pain reliever (80-100 times more potent than morphine) and is used to treat migraine headaches, severe back pain, cluster headaches, bone pain, arthritis, neuropathies, and other situations of severe chronic non-cancer pain.”  Also, I read that “It can legally be prescribed for off-label used but cannot be marked as such.  As much as 80% of the prescriptions for Actiq each year are written for off-label use for sufferers of NON-CANCER,Chronic pain.  Soooo, then ….if I was doing so much better and had a much more happy existence with less pain because no stomach issues and honestly …less pain!!??? Why , then??? Why can I not have my life back? Its not any more dangerous it just cannot be! I don’t  understand because Fentanyl is Fentanyl and how is less of that any better for me, than Dillauded ripping up my stomach whilst my head and neck,…..arms, legs and feet feel “on Fire” along with burning nerve pain! I’m so fatigued, that I can only do something for about one hour maybe two and I’m down for the count! The rest of the day is in bed or in my “Lazy Boy” chair or on the couch!…

Well, I’ll give Dr Bullach that one…he got me “out of that hospital bed in the living room and out doing more stuff” while in the meantime giving me much too much medication …..like I have said before, I’m a lay person and I had no idea !! I wish I’d never taken any of it….I ‘ve never smoked, drank nor have I ever done any drug of any kind…At first, after the car accident, when I went to my 1st pain Dr  for 3 yrs…they’d get upset with me because I wasn’t taking the amount prescribed but was taking LESS….I cannot win….I never have taken more than prescribed either….well, we will see what happens huh? I’ll keep you posted…I have another pain Dr. appt this week on the 6th….Thank you for following ….and we will be on to a new subject very soon…If you want to read back on any of my old posts…one of the pretty good ones is “Illness Doesn’t Equal Lack of Faith”…..it’s a good one if I do say so myself….check it out if you wish….I’ll be writing soon again…not so long this time…My youngest daughter is moving with her hubby to Boise Idaho this week…give me strength. This is going to be so very hard…I miss her already….UGGH Why does life have to be this hard??? lots of love, Suzanne

Symptoms-Opiate-Withdrawal-300x159fentanyl_ParPharmaps-hopeActiq

Withdrawals And One Week Fentanyl Lollipop Free !!


IMG_3282image20140726-114710-42430084.jpg

Hello Luvs,

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: jewelrymkr@aol.com…..g’nite luvs….

willsTrue Colors:  Seeing Is Believing.....sins

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”…..


This content is password protected. To view it please enter your password below:

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.

41e313cb08158ee715308c752e1b1437IMG_6274IMG_6273

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!

prayerchronicpain-circle3