Here we start our journey into exploring the National Pain Strategy and the CDC Guidelines. Since the release of Violation of A Nation in April 2019, we continued our search for information and found more information that supported our report. Come join us as we unveil the story of how we found out that the CDC Guidelines were a part of the National Pain Strategy. Also, we discuss the opposition and other “advocates” in the community that have tried to disrupt our work. This is part one of a three part series. Thank you for joining us! You can find documentation of this work on our twitter account and on our website at www.ciaag.net Below is the link to the document that we wrote about the NIH meeting. http://9thx.mjt.lu/nl2/9thx/5qy19.htm…
Filed under: General Problems
I just found this site. I’m a 43 year old single mother who has CMTX1 or Polyheriditary Neuropathy, osteoarthritis, DDD, and apparently a cracked pelvis. I absolutely loved my pain doctor. I do believe that he was overprescribing me in the beginning, and we fixed it. I was put on the buprenorphine patch. I’m on Medicare and Medicaid. My insurance wouldn’t cover it anymore. So his next suggestion was the buprenorphine 8mg pill (4mg morning 4mg at night) with 4 5mg oxycodone for breakthrough pain. He had already put the stimulator in I don’t use it as it hurts, but it’s his cure all (kickback) he had even said if my insurance doesn’t take this, you need to get a lawyer. I’m poor lol. I started to take it and my pain dropped to a 2. Hardly ever had to take the other med.
My condition has no cure. It’s under the muscular dystrophy umbrella. I have the rare in females X mutation. I was diagnosed at The Ohio State Wexlar Center, since no one in my are knew nothing about it. It’s chronic and just gets worse as time passes. I honestly shouldn’t be walking now, I fought that. I have an 80 year old body. Hip spurs and in my neck. He diagnosed me this January with Chronic Pain Syndrome. I’ve been with him since 2014. And I had the most amazing respect and relationship with him, even though he’s moved to about 4 different locations. He actually was the best of the best
I went and seen him in January. I received my medication and I scheduled my permanent nerve burn in my back. Did that in March of this year. Seen my normal NP in April. I received my scripts and I scheduled a hip shot. My June appointment was with a new NP, and a different location. She didn’t have my records so she was asking about my disease (CMT has trillions of subtypes some not severe, others like mine is a super bad type) she said that she has seen patients with CMT before I was surprised. Asked about the stimulator, I said it hurts and I don’t use it. She told me that she could have it removed.
So I’m thinking that it’s going pretty good so far, until my meds came up. She asked about the buprenorphine I told her it was good just some side effects. Out of nowhere she says well you’re not a drug addict so you shouldn’t be taking it, as a matter of fact the other doctors do not like the fact my doctor gives extended release pills, and this is what is going to happen. She told me that day to just stop taking it as it wouldn’t affect me since I’m not a drug addict. I can keep my 4 5mg oxycodone.
As a former nurse I knew that wasn’t right. I get home and call my usual NP, crying and telling her what happened. She sent me a 30 day script with 1 refill. I then call the front desk the next day to ask to change providers, and what was done to me, and I got my refills. I was called- A liar, I couldn’t provider shop in the practice, and the other refill was canceled. I asked to speak with the office manager and I left her a message about the med thing, and being yelled at.
She calls the next day and apologized for the med situation (not getting a taper) the NP wrote in her notes (which she changed) the taper schedule and that I agreed to get of the medication. After taking 8mg of buprenorphine for almost two years I was told to take 4mg for a week, then 2mg the next week, then 2mg every other day for two weeks and done
I could not believe what I was hearing. I called 3 detox centers and they all told me this has to be done slowly 10% a month. I have been trying since the end of June to get ahold of my Doctor simply to ask for a slower taper. Nothing from him. The office manager called me last week and told me that my doctor wanted me to make an appointment with the psychiatrist, since I’m having a hard time getting off. I did get my other refill, and I have been at 4mg since July 11. My doctor refuses to speak to me, I sent him a letter (The Pain Association has a great resource for this stuff) still haven’t heard anything back. I can hardly move, it’s even harder to get into my house, I can’t even make dinner for my kids.
So I’m trying to figure out a taper, and finding an advocate through my insurance. I just hurt every where. I haven’t even touched the oxycodone I don’t want to have to go through that withdrawal. I’m scared, non movement with my disease is really bad. I’m really hoping that my insurance person can help me. If not I’ll be bed bound for the rest of my life. It’s not worth living with a life like this. I also shouldn’t of been taken off my extended release. So sorry for the long message. I don’t want my kids to see me this way or to have to take care of me. I literally lost what life I had left
Dear Susie,
Hey, this is Shasta Rayne, I am the one with the dark hair in the video above; the co-author of Violation of A Nation that is also mentioned above.
I am sorry for what you are going through. Really sorry and it is NOT ok what you and many of us are going through.
I would like to let you know, you are not alone. In fact, I was also force tapered but my circumstances are much different than yours as I no longer suffer from pain. I went into an unexpected remission from my disease; dermatomyositis. When it left, my pain did too so I decided a year ago to start tapering off of my pain medications.
About 9 months into my slow and comfortable taper; I was told that my pharmacy would no longer be able to serve me because Cardinal Health (their distributor) was cutting them off for the rest of the year due to the opioid lawsuits in my state. I was given a short Rx and told to go elsewhere.
Long story short, I have now been denied by 5 pharmacies to accept me as a patient. Our supply chain in CA has been completely disrupted leaving thousands of patients without medication. It is horrific.
I was thrust into a rapid taper that has rendered me useless. I spend my days dealing with autonomic symptoms that mimic dysautonomia along with crippling GI symptoms that frequently prevent me from leaving the house. I went onto a clonidine patch which has been extremely helpful in easing the restlessness and elevated heart rate. Just like you, I reached out to a “patient advocate” with my insurance company and told her everything I know and asked for help finding a pharmacy to help me slow my taper rate, just long enough for me to taper off (should only take me 3 months at my prior rate).
I am almost completely off my meds. I was at 80mg at the beginning of June and as of today, I am at around 20-25mg depending on the day. It has been sheer hell.
I did write a letter with my partner Lauren Deluca about what happened and in the letter, we break down the background to why this is happening (at least in regards to pharmacies and the supply chain).
There is so much more to the story of what happened to pain patients. Lauren and I have it all on our website. I wanted to encourage you to come over to our site http://www.ciaag.net to check it out. I am in the process of re-organizing all of our content and we will be publishing a new website very soon that will be easier to navigate and more inviting/user friendly.
Again, I am so sorry this happened to you. The writing is on the wall; those in charge want a world without opioids and they will stop at nothing to see this through. Patients are being harmed in the process. Lauren and I are in this for the long haul and are fighting this as best as we can but it will take time. I can’t offer you much other than a place to come and meet like minded people who do understand what you are going through. If you would like to join us, go to our website and sign up for free membership and you will receive our emails and information about how to get involved if you would like to participate in taking a stand against this policy failure. It takes nothing more than being able to forward emails (in other words, no obligations or fancy activities – our stuff is designed for people who are not feeling well and can’t do much physical activity). We also have a Facebook group that is a nice place to hang out and stay up to date on the latest while meeting others who understand how awful this truly is.
Hang in there, I hope things get better for you soon.
Shasta Rayne
Fantastic work Steve ad all !!!!!!!!!!!!!!!!!!!!!!