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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Flipping my Living Well with Chronic Pain; A Hard Look at My Aging Parents

Hello Peers,

Life doesn’t stop because we have pain, it marches on.  Yesterday I happened to be at my parents home during a trying moment.  My journaling, adapting my activities of daily living, learning about calming methods and alternative medicines, listening to my limits ( and applying them), work and academics in this and related human needs fields, all served me well. I read my email to my husband this morning and he suggested I put it in my blog.

A side note before the email posted below;  I have not been attending to this blog for quite a while now; I am sorry for that as I know, as you know, we all are looking for our Peers to assist one another. However, as I stated in my last few months of blogging before this,  I knew I needed time to assist myself before I could continue to assist others. Don’t we all.

I am almost finished with one small project. It’s a project that would have taken a person not in constant pain about two months; it’s taken me almost eight months. Still, I have the pleasure of knowing I did it! My second “project” will be advertised here in about two months. I have been slowly trying to put together a “Well Living With Chronic Pain” program for several years. I will offer it in person in the area I live in, and online via pre-made video webinars.  Both will not accept insurance but will be inexpensive with options for us, financially challenged Peers. I created this out of need. Books are out there in the dozens, pain clinics, advice, support chat rooms, but I could never find one easy to follow, and adapt for my needs, program that allowed contemplation and practice with advice from Peers. This is not a money maker, rather it is a act of love.

Hello my parents

Today was a good day for my observations. It was hard for me to watch (…) in pain but it was also a good thing. I was able to step in and use my skills without having the emotional components of a marriage. I knew tricks of dealing with bad pain that I instantly began applying.

(…),
I observed you having little patience with assisting (…) I know you had a very difficult time when you were young; suffering with asthma and your parents virtually ignored you. I believe you learned to keep it all in as no help was going to come to your aid. This, combined with your easily upset emotional equilibrium, makes it hard to be patient when a loved one is moaning out loud. I understand that. The suggestion I have is to put yourself in their shoes, not yours, and practice acceptance of this new part of your daily life. Also important, find ways to remove yourself and talk with (…) about needs versus wants. (some wants are actually needs, this can actually be tricky and has to be figured out by him but without no ability for you to continue living)
I could do a presentation for you both if it would help.

(…),
I know from your childhood that you suffered for many months with a debilitating illness; any intrusion like this one brings back fear. You learned that you had others there helping you and voicing pain was a safe thing. You also became in control of your illness, through having that support.

There is nothing wrong with either of these childhood experiences helping you in your adult lives except that they now serve to interfere with your marriage as you both age.

(…),
Be kinder. Also, don’t ask what (.) wants, think about what (.) needs. (.) needed looser pants. Period. Roll up the socks. Have (.) sit to dress or stand but don’t inquire too much. (.) has his rights but needs to let go a lot more.

(…),
Don’t demand every little thing. If your helper says you don’t need your wallet, you don’t. Practice releasing some control. Believe me it will serve you and future caregivers.

Both of you are going to need to practice asking for help. Being private is great. Nothing wrong with it. However, if an illness or aging issue is too much your going to need to speak up and trust that I am a competent adult who can, and will, be there for both of you. Your other children are far across the country and can’t come stay with you for a few days or weeks.

I love you both very much. I am sad to see your pain but I think, and hope, my words might help here. My future actions as well. I am a trained Social Worker, Independent Living Specialist, and Chronic Pain Peer who has lived well with many syndromes for decades.

***Living Well doesn’t mean one lives perfectly or fully in a typical eight hour day, it means as little stress as one can create by mindfully creating ones life.
💜🦋💜

Lucinda Tart, ILS, Chronic Pain Peer, MSW

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.

This link to the “Wise Brain Bulletin” is very useful. Especially the Story Shared by Toni Berhard for New Fibro Peers

This site was emailed to me today. It is a all encompassing brain site. It even solicits input from it’s subscribers. And, it is free.

This particular story I linked discusses mindfulness, with a Buddhist slant, however we can all use the idea of being mindful without being a Buddhist. The story can also just be useful as a reminder to stop being so hard on ourselves! I know that I create scenarios that are end-of-the-world all too easily. It takes awareness, which requires me to practice being aware of this state, in order to back off and give myself a break. Not to mention the other persons in this life! Pain tends to create both a stressed out mind and a understanding mind. I often find these sparring with each other in my thoughts.

Being aware, or mindful has really helped me to stop my thoughts from battling it out. It is, and was, a practice that I chose to use.  Mindfulness has become a well researched concept over the last decade. Neuroscience and psychology are using this to understand and assist people in all walks of life. I teach a method of mindful relaxation; a group I developed ten years ago. This excerpt from Toni Berhard’s book is based on her experience of living with chronic pain and illness.

A piece of her story immediately jumped out at me; letting go of being the “title”. I returned to college two years after I began living with fibromyalgia. I spent the next ten years in college and universities achieving my MSW; Child and Family Therapy degree. Before I could begin my career, I was rear-ended at a stop light by a van going 30mph. I was devastated for the first 16 months! All the physical and mental problems this created in body stopped my dream of having a fulfilling career. While those problems are still ongoing, I have once again been given a gift; I slowed down (no option) and am now finding a new way to use all the academic and personal experiences in my own way, my own business. You may also find this comforting. Maybe not now, but down the path of your live lived Well.

Being able to use the tool of letting go of our negative thoughts that assist in reinforcing our worst fears is very useful for me. I hope you find it to be useful as well.

Note: It is a larger download, but a short, informative read. It can always be deleted when finished, or keep it for inspiration.

Lucinda, Fibromyalgia Peer Advocate/Life Coach Advisor

http://www.wisebrain.org/wisebrainbulletin/WBB9.4.pdf