My Pharmacist Illegally Changed my Pain Medication

https://www.acsh.org/news/2017/09/28/cvss-transparent-opioid-pr-stunt-11880

Two weeks ago I went in to get my medications filled for my chronic pain and fibromyalgia. I’ve been getting the same medications filled, at varying levels and strengths, for almost 20 years now.  Two months ago, the same pharmacy and pharmacist, got involved at the level of an acting DEA agent with me and my doctor. It was explained in no uncertain terms that I would no longer be able to fill my pain medications at this pharmacy  unless I lowered my dosage. As my doctor and I were already planning to lower one of my medications (for the second time in ten months), I did comply with this; the very next month. I also had a couple long and hostile conversations initiated by the  pharmacist during this time, two of them bringing me to tears. It’s noteworthy for my readers to understand that I’ve been working with this pharmacist for six years and this pharmacy for almost the whole 20 years.  The month that I lowered the one medication my doctor raised my other medication to two extra pills a day. My doctor even went so far as to speak with my pharmacist and send in a written plan about the two pills a day. When I phoned my doctor the following month for a refill on that medication I requested of the staff, three times, to lower the dosage back to four pills a day; upon arrival at the pharmacy I discovered that my doctor had given me six pills a day again. I explained to my pharmacist that I had only asked for four, after he loudly and  rudely let the entire counter know that if I did not go back down to four next month he would not fill my medications ever again. Embarrassed I explained that I had only asked for four a day that month. His response was that I needed to prove it and that he would not refill my medication until six weeks from now so that I could approve it. He did not consult with my doctor prior to doing this. He did not acknowledge that I was continuing to be compliant with his rules. Peers, despite pharmacist acting as DEA agents and as doctors, it is illegal for them to change someone’s prescription without first consulting with that person‘s doctor. So as you may surmise I will be talking to my doctor in the next few weeks and looking for a new pharmacy .

I know this is not only my experience during the opioid epidemic or crisis, what I don’t know is exactly how I’m supposed to respond anymore. Anyone out there have a suggestion?

Lucinda Tart, Pain Peer Advocate

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My Story of the Dread Fentynol Patch and Lowering the Dosage to Accomodate Ability to Take Oxycotine, or, Why did my Pain Medications get Pushed up to Such a High Amount, and then I Have to Suffer.

 

chronic pain and prescription medication use

addict or chronic pain lifer

Hello Peers!

I haven’t posted anything in a very long time, sorry about that. I have been steadily trying to understand my PTSD, caused by being rear-ended at 30mph, five years ago.  It’s extremely difficult to understand (I am a degreed MSW; Child and Family Therapist, who actually studied the symptoms as they manifested in our returning military veterans, and the sexually abused, but no real mention was made of a life-threatening event like mine) and even more difficult to live with. My last few years have been spent with very limited energy from the extreme highs and lows that my brain constantly creates from fears that are not occurring in the moment. When I am not spinning out of control because I had to leave the house and deal with events that I can’t control, my pain has been keeping me in bed. It’s not a combination I wish on any of you (in “archives” there is a blog about fibromyalgia and “nature or nurture” that some may wish to read).

I finally found a tiny space of time in which to write about my recent experience in lowering my Fentanyl patch by 25mcg.  I was more than happy to do this, as I don’t enjoy being dependent on medications for pain control. I do my best to live well using other methods, they do help but they don’t control the pain by themselves. I have written and will continue to write extensively about how to live well with chronic pain; this is not about that. Rather, it is a frank discussion about my personal experience with my withdrawal symptoms, my doctor’s agreement about increased oxy pill use during the ensuing months, and the pharmacist who has to live by his corporate policy instead of human decency.

My doctor and I have been discussing lowering my opioid use for a while now. At first we discussed lowering the pills, it seemed a better idea as the patch is continuous relief without the ups and downs caused by waiting for a pill to take effect, and feeling the effect break down after it’s 4-6 hour life span in my system.  Somehow we decided that the patch was the smarter issue to focus on decreasing. Let me say to you all that he is a wonderful general practitioner, not a pain management specialist. He inherited me as a patient and has been nothing but understanding. His practice initiated a change in amounts of total opioids after the CDC drastically lowered the limits “suggested” as the daily allowance. It seemed that my patch was pushing me beyond those limits by quite a lot. So, I got an increase of two pills a day and lowered the patch by the 25mcg.

My doctor assured me that I would have the amount of pills I needed until my body adjusted to this decrease. The first three weeks I found myself in pain I didn’t know I experienced. I also found that I needed more than the extra 2/day he alloted. He knew this could happen, see above discussion about allowing me what my body needed, and the first month he sent my pharmacy an early refill.  The pharmacy filled it.

My adjustment didn’t automatically end there, at the end of three weeks. I was still trying to learn to live with an increased pain threshold. My brain was learning to make new endocrine and seratonin receptors (studies have shown that chronic pain brain’s don’t make enough of these natural pain relievers, so recreating them when they don’t exist is an interesting thought process). Mental addiction is not the same for us, we don’t get “high”, we take these prescribed medications in order to try to be a part of society, just like the rest of the population. That does not rule out that there is no mental addiction. In my case, my mental health went way down. My fuzzy brain symptoms became much worse. Bottom line, it took me three months to relearn how to live well with a higher pain level. Recreating my understandings of what restrictions I had to put into my days, how to adjust my activities of daily living, and more.

Now, the second month of early refill. The pharmacist got distressed and dragged out filling it for three days.  I got through it with luck. The last month, third, I was finally able to use only half of the amount per day of oxy I was allowed; it was too late to not need one last early refill. Now my pharmacist was refusing to fill early and demanding to speak to my doctor. My doctor was in only half a day and I now felt like a drug seeker. I was incredibly humiliated and completely depressed for a few weeks.

I tried to talk with him and reminded him that I had only recently gone down by much, much more than the amount of pills I was replacing the 25mcg of Fentanyl I was on, and, that I just finally accomplished it. No compassion there. My doctor? I don’t know if he called the pharmacist or not, I was too humiliated to phone him back.  Again, I got through with luck. The pharmacist did not fill it until five days later.

I learned a lot from this experience. The first thing I should have reached for was my computer. I needed to do research on how others had lowered theirs. I needed to know that 25mcg of Fentanyl is equal to an incredible amount of oxy pills. I should have lowered my pills first, then the patch, then increased my pills. I won’t be lowering anything again anytime soon.

There is a silver lining here, I did lower both! Yes, I have more pain but I feel better about not having all these medications in my system. I also straddled that line that all those without chronic pain are always “suggesting”, “can’t you do this without all that medication?”; code for, “aren’t you an addict?”. I am not an addict. I have said this many times before. I am addicted though. This is not my fault. This is my body’s inability to generate enough needed hormones and a deficit of substance P. My bodies overactive nervous system.  The CDC, doctors, and pharmacists are not who anyone should be blaming for our high medication dependence. The pharmaceutical companies started this a long time back. If I had known what most still don’t about the fraudulent claims they made about  the “non” addicting pain relief medications, I would never have allowed my doctors to continue raising my medications to these amounts.

I prevailed because I desired to. Because I am not an addict. Because I have a great doctor. Because I am not only a natural advocate but a degreed advocate. My concern is for those who can not do this for themselves. Mandatory lowering or removal of medications that work for us is here. There is no blame where it should be placed, there is a lot of shame where it should not be felt.

XXX

Lucinda Tart, Advocate, Consultant, Chronic Pain Advocate

Change in Weather, it’s Fall, Here Comes the Rain and Wind; Adjusting My Goals

Well it’s the time of year I always try not to think about. The temperatures drop, the wind sneaks under my jacket, and water flows from the dark clouds as the barometric pressure drops. Despite keeping up my positive expectations for my life with fibro, the start of this change in our weather patterns brings a sense of fear in. Each year I believe I will do better when it hits, and each year I learn again that this is simply not how my body reacts.

While my body reacts with an increase in my pain levels, my mind  begins the internal struggle of acceptance. I find my thoughts at war.  The flares of pain put me back in bed making one part of my emotions lean towards hopeless. The mindful self jumps in and begins planning how to accept living well doing less. It’s interesting to observe.

I know my friends and family probably feel that I should be used to these increased pain changes and continue to get on with life. I could buy into this belief and get upset with myself, but to what end goal? Being angry at myself only serves to increase my pain by creating additional emotional stress.

Today I am in bed. I am observing these thoughts right now. I am not angry at my pain. Disappointed, yes. Tomorrow I will regroup my plans for my expectations of how much and where I can work, do household chores, and continue my exercise routine (one I just created). Today, I accept the need for rest.