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

The Longest Fibromyalgia Flare in Years; New Chronic Neck Pain

Three years ago I was rear ended while stopped at a red light. The van totaled my cars rear, subsequently totaling the car. It, and me, were shoved by the impact to the end of a large intersection. I have suffered through numerous physical and mental issues due to this, lately it’s my neck that’s wreaking the havoc I’m enduring every day, every minute.

The impact inuded whiplash, I was “out” during my trip across the streets, but know my head was bobbing away. I tried to see a specialist about my neck pain but with all my other injuries, the process got started and then I dropped the ball. I was overwhelmed with so many doctors appointments. My family helped me with virtually everything for two and a half years, I was really in bad shape. Today, I am in medium shape.

The last month or so, instead of experiencing neck pain several times a week and when I lay down to sleep, I am having chronic pain in the neck! Those of us with fibromyalgia know that our neck and shoulder area is already a tender area. My neck pain is increasing the trigger point pain in this area due to tight muscles or something else that I haven’t had diagnosed yet. All I know is it hurts! This combination has kept me on my coach, or in bed, for almost two weeks now. At first I was accepting of living with increased pain; thinking it would calm down. It’s not.

I am not feeling very calm about it today. I am feeling angry. And, that’s ok. But, it’s not going to be alright if it screams pain that stops me from all activities of living, except walking my dog, for much longer. The only thing I am accepting right now is that it’s time for me to go back to the specialist, and I need comfort food. Chocolate sounds really good right about now.

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.

Weight and Pain

http://www.arthritis.org/about-arthritis/types/fibromyalgia/articles/obesity-fibromyalgia.php

I recently wrote a blog piece about my lowered pain levels, or remission state, from my fibromyalgia pain. In that piece, I concluded that a year-long illness I went through, which resulted in a large weight loss was the contributing factor, so I have decided to follow it up with some actual research into this connection. And indeed, losing weight has had medical validity in pain intensity for many years now (see above link). My doctors always told me to lose weight, and to exercise. The discussion of  exercise also been a popular thread among my peers in online support rooms. Most stating it as helpful, if not with weight, at least with a healthier, happier state of mind.

I was always conflicted about this idea. I would come away from the doctors or the thread feeling shame and anger. It’s easy to tell someone with constant pain that they should get out there and walk, or swim, but it’s not so easy for that person to do. I know that just walking the dog could trigger pain for the entire next day; a very large price to pay! I want to interject here that while that is “not” occurring for me right now, it is apples to apples that it will start happening again soon (I have never experienced a remission of pain for this long, not in all my 17 years of living with fibromyalgia). Another point, in my current relief condition, is that I do still have medium pain every several days and a flare-up of pain large enough to send me to bed for the day every 7-9 days, so as I write this I am clear that this piece on weight and exercise applies to me as well as my peers. I felt shamed because I simply couldn’t create a routine of regular exercise, not with the pain threshold I live with. Anger followed because it was easier to project this feeling onto the doctors and my peers then it was to look deep inside myself and take personal responsibilty for my choices.

After losing all the weight and feeling the relief of waking up everyday at a pain level of 4 instead of the years of 5-6, I now feel ashamed that I didn’t try harder a long time ago. Lately I walk my dog farther every day then I did before, even when my pain level is at a raging 8. I make time to walk a slow three miles at least once a week. I am getting a donated recumbent exercise bike for the winter and will be applying for a low-income monthly membership to my local YMCA where I intend to use the swimming pool, take water aerobic classes, and indulge in some gentle and light weight lifting.  I am also looking into finding a free, local Tai Chi group.

I have not turned into an overnight super athlete, far from it. With the evidence of research and my own, personal experience it is obvious that the adage, “no pain, no gain” is true.  I certainly can not do all of these items weekly, but I can integrate them into an alternating monthly schedule. I will need to start slowly! My upper body is triggered very easily, simply driving the car for more than hour creates triggers in my shoulders, neck, and then head muscles (just typing this is aggravating my trapveious muscles). I am planning to begin exercising in chunks and in no more than 20 minute intervals. I will track what I actually do in my journal and then track how I feel immeaditely after, that night, and the next day. After a month or two of alternating exercising styles and journaling the resulting pain or no pain increase, I should be able to create a program that is tailored to my needs. Losing weight has definitely helped both my pain and my attitude, I am sure my seretonin levels are higher than they were, what a blessing it is for any of us to gain this important nuerotransmitter back. Despite the gift of this gain, losing so much weight has left me with wasted muscle mass (as we age we “useit or lose it”). I am keenly aware  that if I don’t start now, I may never start.

I try to share healthy, successful, positive living ideas in this blog. It would be hypocritical for me to share them and not live them myself. Besides, I love the hope of staying in a state of less pain! Try to find your weight loss path. Decide which exercise routine fits for you. Then, start tomorrow. XX

When You Get a Break from Pain

you-are-my-sunshine-4

https://thecandyperfumeboy.com/tag/sunshine/

During the last eight weeks I have experienced less pain than I have in years. In the 16+ years I have lived with fibromyalgia, this is only the second reduction in pain I have had the pleasure to be in. Despite many other medical issues during this time, emergency gall bladder surgery, stomach flu, the flu, and migraine headaches from my experience of being rear-ended, my chronic pain is at a low of 3-4 on the pain scale! Well, except for a once a week flare up of pain that keeps me bed ridden, but, hey I will take this exchange anytime!

I have been paying attention to the decrease in my normal achey body and wondering, why? Could it be that my gall bladder was taken out; that seems whacky as most fibromites experience surgery as exacerbating their pain levels (I have blogged about this before, explaining the need to discuss this phenomenon with doctors prior to surgery). I experienced this after my knee surgery two years, so that doesn’t feel right. Perhaps it is my mood, which has been better in general since my gall bladder surgery. Or, maybe it’s the fact that I lost an incredible amount of weight over the last year because I was so scared to eat anything! Let me explain this further; I was misdiagnosed with gastoparesis a year prior to the surgery, which led the doctors down the wrong road. Every time I went into the emergency room it was reinforced that my diet was causing the problem. The pain was off the charts and if it was caused by eating, then I wasn’t going to eat, at least not much! Definitely not the best way to lose weight.

Losing the weight finally allowed me to walk without a cane, to use the stairs with one leg at a time per stair, and to walk three miles at a time for the first time in three years. This leads me to think that possibly losing the pounds is the reason for less daily pain. I gained 60 pounds when I was pregnant with my daughter, 27 years ago. I never really lost that weight and gained a bit more over the years. Since my surgery I have been complaining of needing to buy a entire new wardrobe, two sizes or more, smaller than I previously wore. This has caused others in my life to politely ask me to stop whining as they are still trying lose their own weight, a reasonable request.

Still, it bothers me that I lost soo much weight so quickly; it can’t be healthy. However, if there has been two shining gifts from the loss; my usual 6+ daily pain (at least for now) and my ability to walk normally,and even drive my own car again. I thought I would never be able to do these things again. While I have decided that losing the pounds is the reason I am in remission, I am still caught in the thought process of fear that all chronic pain suffers seem to loop in. I find that I am frequently holding my breath for the other shoe to drop. The shoe of the fall and winter season. It’s glorious to be in less daily pain, don’t get me wrong, but I can’t help noticing that the season is changing. I am doing fairly well at pushing the negative thought away by breathing in the freedoms I am experiencing. So, for today I will remember to use my positive tool of just breathing.

Words of Wisdom for “Creating Better Health” and Less Stress by Toni B.

Hi Peers

I read this yesterday and it fell right into my belief system when it comes to doing my best while living with chronic pain. Toni’s choices are the same as mine, her articles always serve to affirm and remind me to keep striving towards my best.

Enjoy:

https: //www.psychology today.com/blog/turning-straw-gold/201604/when-you-re-chronically-ill-giving-versus-giving-in

Important Conversation Last Week With my Primary Care Physician and Opioids

http://blogs.fda.gov/fdavoice/index.php/2016/02/changing-course-a-new-approach-to-opioid-pain-medication-at-fda/

My treatments for chronic pain are changing. This is a personal decision I chose after several years of thought and a trial run varied products in the Medical Marijuana dispensaries. Every person who lives with constant pain must decide their own paths, we are each unique with unique pain patterns and life styles. Previously, I have tried the SSRI’s, the anti-seizure meds, and over-the-counter medications. They all failed to work for me. Either they didn’t touch my pain or they fogged up my brain more than it already gets fogged. I have been left with opioid use. Opioid use as prescribed is still very hard on our entire system and causes physical dependency. This creates a slight need to increase the dosage every few years to achieve the same relief.

In order to address my overall health and decrease my dosage, I began trying CBD first, then added in a low dose of THC at night and during flares. After doing this for the last three months, I am seeing a decrease in my opioids; not dramatic but by two pills on “normal” days and more on flare days! I blog about honest relationships and taking personal responsibility with your doctor. Last week, I informed my PCP about my use and my intention to radically decrease my opioid use over a period of several months.

He was completely supportive. He believes medical marijuana has many cross modalities benefits in pain control and much less toxic effects on our system. During this discussion he informed me that the FDA will be radically changing who is allowed opioids and who can prescribe it. This will occur within five years.

I feel that this is not common knowledge in our population and decided to inform my peers. I also decided to be transparent about my decisions in pain treatment. It won’t fit for everyone, it’s not simple for me! THC knocks me out cold, meaning it’s not an option if I go out or need to work. It could adversely effect me in job searches or closing a job offer. For me, natural, less toxic, pain relief is the first step to living better, the rest will sort itself out.

Please read, and research further, the above link.

 

 

Accepting my Limits, Creating New Strengths

It is very difficult to accept limits on living your life. I have gone through this process before; during the first three years of my diagnosis of fibromyalgia. These last few years I have had a much harder time. Maybe it is because I am older now. Maybe it is because there are more than limits now. Or maybe I am just not willing to let go of my dream that I spent ten years creating. At the end of the day, none of this matters, I have to accept my new limits and create new strengths.

Just like the first three years of living with this chronic pain, my loved ones are tired of me being limited. They are tired of hearing about it. Tired of watching it and tired of helping me. I can not say I blame them as I am tired of it all as well. The disconnect that worries me the most is that they want me to fix it “now” and I am not capable of spinning a magic spell that will get there tomorrow. I am able to begin to plan steps to follow that will get me there, and, it is time to start.

Sure, they could go on and assist me indefinitely and I could continue to feel guilty and disempowered. But my mental health is on the line now. I need to affirm my new strengths. To start this process I need to know what they are. Just thinking about starting over again in this planning, journaling, and finding the new me is overwhelming. This makes taking even the first step daunting.

As daunting as it may be, I am beginning to take that step. I have begun to reorganize my home life in order to function within better. That is the first and most important step we all can take. Once we are able to feel empowered to handle at least some of our lives in our world, we can begin to find more hidden strengths.

I am beginning to realize that spending those ten years following my passion for social work, to assist persons in physical and mental distress, was not entirely a waste. I may not be able to do all that I learned, heck, I may be only capable of doing a small amount of it, but, I can still do it! I have started here, on this blog. I am beginning to branch out from this blog to more on social media. I have recently thought of what I might be able to create or offer to agencies out in the brick and mortar world.

None of this will occur tomorrow. It might take me a year, it might only be six months. I have put these ideas down in the section of my journal entitled, “Important Thoughts”. I use this journal daily. I will continue to take the time to work on my new strengths and stop focusing on my limits every day. We can all do this, I know we can..