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

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How Blogging for my Peers Assists Me

Good Afternoon Peers,

Its time for me to thank my Peers who read my posts. One year ago, I began this site. I was still struggling mightily with cognitive issues, from a rear end accident I experienced while stopped at a red light, three years past. I was not able to write a six page post without spending almost three hours figuring out context, spelling, and connection throughout the post. In looking back at the beginning of this blog, I find many spelling errors and dropped thoughts despite the careful scrutiny I used.  I desperately needed both a way to use my MSW degree and feel some sense of purpose.  This small blog gave me that positive purpose. It wouldn’t have happened without all of you.

I am better now, but not well. Along with increased areas of constant increased Fibro pain, I am struggling with PTSD. I have memory deficiencies and problems with executive functions. Critical thinking. This blog and therapy literally keep me on track in trying to both remember and apply my personal toolkit. Which is not to say I am able to use them as well as I did in the near past. I remain hopeful that in discussing my personal and professional positivity paths, some of them will stay in my daily use again. Maybe one day they will stay in mind all week, even all month.

While I know that I can still offer this, even teach these positive ADL’s, I do not know  how realistic my goals for myself are anymore.  I do know that without writing them down, without researching them, and without bringing them back to the forefront of my cognition, I would remain lost in negativity. I am enormously pleased that some of my peers have found issues they relate to, and others, new tools to help them get through their chronic pain!

Despite my new chronic medical issues, this site will always be a happy place for me to take my time and thoughtfully share with all of you.

XX😘

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.

In-depth Research Information for Fibromyalgia Survivors

Hello Peers,

I felt that this informative piece should be posted for a overview of everything associated with our pain syndrome. It addresses all the nuts and bolts.

http://umm.edu/health/medical/reports/articles/fibromyalgia

XX

Similarities Between Fibromyalgia and Mood Disorders Some Research Points out the Links

Link to Research/Presentation by NCBI on Fibromyalgia and Spectrum Proposal of Other Co-Existing Disorders

Hello Peers,

I have been having a distressing, verbally attacking posting conversation about Fibromyalgia and the link to mood disorders these last few days. Unfortunately, this has occurred in a “safe” post forum, where discussions like these are not productive or helpful for the general needs of Peers. I believe I started this problem by stating that there was no empirical research that connected these disorders. I generally point out items I think lead Peers down a road that may increase either disinformation or fear of new and different symptoms. I don’t do this to be a know-it-all and this time I was called out onto the posting “mat” about my statement by the original poster. I was informed that I was wrong and that as someone who is a therapist, I should check out my DSM-IV book. I apologized for the second time to the other Peer and posted I would not engage in this on this space anymore. All this did spark my interest and I Googled the research available on this topic.

I did indeed find some research. One was a research article that was empirical, from 2008, another was always the always reliable information from the NCBI and a general jargon piece on PyschCentral’s site. The other two research articles I found on Google, not in my professional peer-reviewed journals, are simply about depression in general. Here is what I gathered from the 2008 article and the generally similar information from the NCBI (NCBI offers up-to-date information about Fibromyalgia, this focused on the topic I researched tonight). People with Fibromyalgia and Mood Disorders both have similar problems with their neuroendocrine and autonomic systems responding as normal, along with possible genetic factors, environmental factors and social factors that can trigger any one of these conditions. The problem with the 2008 article is this; the p= numbers are very low. A normal empirical connection is considered .05 in research. There has also been much debate about how the DSM is used in general since the newer DSM-5 came out, with opponents contending that, among other disorders, even normal sadness can be pathologized. That does not mean the DSM-IV does not have important role in understanding mental health; it is the best empirical data in one place for mental health therapists to begin with in determining mental health issues that are currently beyond what their peers are experiencing.

I definitely can see a connection in his hypothesis. And, I do use the DSM-IV but the starting diagnosis should be cautionary as the person’s situation may change as their sadness clears up; without medications. *(This is only my opinion). As a Peer with chronic pain I have discussed depressed days and stated that depression can cause physical pain. We can all think of many co-existing syndromes and/or illnesses, beyond Fibromyalgia and Mood Disorders.  An example would be depression combined with overeating and pain in the persons knees. A person could have arthritis and a mood disorder, heart problems and Fibromyalgia.

As time goes on we may find that there is a strong connection to these two syndromes/disorders. This is why there is always a reason to have your doctor take your full history when you experience any syndrome or illness. Just because you suffer from A doesn’t mean you don’t also have B and C. A person who begins to experience any new symptoms should always seek medical attention, not advice from this blog, a forum or from Google only! We should work closely with the doctor, creating a relationship that lends itself to weeding in/out all possible issues.

I also was called out on the DSM-IV and whether I knew my diagnosis; I do. I have seen many depressed, hospitalized persons with Fibromyalgia. But, not a high number of both in one person. Just like a General practitioner or Pain Management Specialist, I take a full history of the patient, current and past social background and their family history. I have discussed that each of us is unique in our symptom presentation. I found that during my year in the hospital and I find a large difference in one Peer and others in their posts, blogs and in person. Our experiences as we journey towards living Well are unique.

It has been previously posted in my blog that new, empirical research shows dysfunction in our brains, central nervous system and muscles. I was surprised by this post attack to hear that mood disorders were strongly linked to Fibromyalgia. There were two components mentioned in the 2008 research, the neuron receptors in our brains and our autonomic system, that are the same in both syndromes. Fibromyalgia survivors have an additional dysfunction,  our central nervous system. Also discussed in both resources were genetics, social and environmental factors.

Genetics have been a marker for a multitude of syndromes and diseases for a while now. Social and environmental circumstances as well. I am taking the time tonight to delve into this in order to inform my Peers about this thought process. The more we know the more we can learn about chronic pain, differing presentations and what may fit for our unique symptoms. Perhaps these two similar dysfunctions helped to jump-start the new research that includes all three areas and inform doctors to always closely monitor their patients health history. I am truly sorry that the other person became so distraught about it all, this is never my intention. I am grateful that it allowed me to find out about this concept and do research about depression and Fibromyalgia similarities.

One last item is the debate about anxiety and Fibromyalgia survivors. I have had some anxiety my whole life, who hasn’t? One of my parents had overwhelming anxiety most of their lives. I do not think I have ever met a person going through difficult situations who doesn’t have some degree of anxiety. I will leave this for you to think about, and, research if you desire.

Please see your doctor and do your own research. Being informed by doing your own research is the best method to decide what fits for you, makes sense to you and what tools you will want in toolkit.

Links, Information and small rant n rave for the night, (tomorrow, CDC)

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Advisor

*This blog is never meant to replace a visit to a professional. I am in no way giving out professional advice, even if I use my professional as my opinion in a post.

Soo Many Medications; Trend Today is to Prescribe Cymbalta, not Opiods. Here is Peer Comments on Their Experience

Behavior Health Service News, CFAH

Hello Peers,

Hope everyone is having a fluffy cloud day instead of a pain on the coach day. I did not post yesterday due to loads of errands, which lead to loads of fibromyalgia exhaustion and pain. Barely got home before I fell asleep at 7:30pm. Woke up at 12pm today. The last month I have had to take over every chore for a two person household. I have been experiencing flare-ups twice a week and an all time high of anxiety, depression and irritation. It has been one of those gifts that we don’t ask for, but, we find at the end of the our ropes. More another time.

Today, I wanted to discuss medications again. When I was diagnosed medications like Cymbalta were not created yet. I posted earlier about how I fought to not start on the path of pain meds. Not being able to take the screaming pain any longer, I gave in after a year. I now manage my pain with a combination of pain meds, patch, exercise, change in my activities of daily living (ADL’s), and stress reducers like mindful actions and meditation.The trend has drastically changed to using FDA approved medications like Cymbalta.

I have tried other Serotonin and Norepinephrine reuptake inhibitors; Buspar and Nortriptyline. Also, tried Cymbalta for about a month. All had the same side effects on my mind and body. My mind felt stuffed up with cotton and I grappled with finding the right words/thoughts. My body moved like I was drunk. Needless to say, I am not a fan of taking something for depression when I experience these symptoms. *I personally feel strongly that while depression is a component of having constant pain, we are not depressed!

Cymbalta was created for depression. It was tested for pain and is now widely prescribed for chronic pain suffers. The link I am posting today is both research and comments by fibromyalgia peers about using it. The comments are mostly slanted against using it. I want to be fair in my blog, thus if you use it and it assists you with your pain, I give you a big “YEAH”. The one issue I kept stressing throughout my blog is that we are all unique individuals with unique needs. That includes what medications, or no medications, work best for you.

My next post will focus on many fibromyalgia peers who focus on newer research, showing that there are important other factors needed to help decrease our pain.

Lucinda, Fibromyalgia Peer Advocate/Life Coach Advisor

**If you are depressed, please seek help from a professional right away, this blog is not for addressing serious depression and the author is not capable of giving medical advice for this or any other mental/physical needs; it is a blog about my experiences, my opinions, my links to other blogs that I feel may assist other fibromyalgia survivors to live Well.