Praise From my GP for my Willingness and Ability to use Other Tools for Pain

Hi peers,

I just wanted to add a quick note here today, one that I feel we all deserve to hear more often.  At my last check my doctor and I discussed the fact that I dropped my Fenytanol patch use by 25 mg.   He noted that while it took me three months to completely wean myself from its usage by adding in more pills, oxycodone, that I had done a great job. He then discussed dropping down another 25 mg. I told him that while I was definitely interested in doing that I wasn’t interested in doing it until after the winter due to the increased pain that winter brings.

He pushed the idea a couple of times but ultimately left it up to me without being upset. As we continued to discuss my experience of the withdrawals, I brought up my continuing search for new tools to use for my chronic pain as lowering my medication increased my pain.  I was rather afraid during this visit that he would be upset with me for Continuing to need more pills or not immediately lowering my patch.  As it turns out it was a very different experience and I had no reason to be afraid.  As I got up to leave he stopped  for a moment in the hallway and smilingly told me that he wanted to congratulate me on how vigilant I was in finding and using other tools to deal with my chronic pain. He talked for a moment about how so many patients don’t do this and he wished that they would.

As chronic pain sufferers we rarely get that kind of validation from our doctors, but we need it. Of course this means we also need to be actually finding and using our tools. Each one of our tools in our tool bags will look different from someone else’s but each tool has it’s purpose. It may be that one of our tools or many of our tools only work sometimes but we need to have them in there for that time. I know as well as all the rest of you do, that it’s exhausting just to be in pain and the idea of both finding and using those tools can feel like a useless drain of our already limited energy, yet it’s so very important to keep at it. Once we have our tools we can use them to suffer less. Once we understand our pain we can avoid the need to suffer without understanding why.  This creates power over our pain, instead of it having complete rule over our body and mind.

We have to fight for ourselves. We are our own advocates, no one else      knows  how we feel and what we need but ourselves. Not our family and certainly not our doctors, that’s been proven time and time again to me. I continue to struggle eith adding new tools every week. But it’s a struggle that I try to embrace. My doctors words to me should be words to us all, words of comfort and wisdom.

As the rainy season storms in keep working at it, don’t give up, you’ll find what you need. I hope all of you stay warm and have positive experiences this winter.

Lucinda Tart, ILS, Chronic Pain Peer Consultant

 

 

 

 

 

 

 

 

 

 

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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

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.

THE Continuing Question; Opioids Use for Chronic Pain

One-third of long-term users say they’re hooked on prescription opioids – The Washington Post
https://apple.news/ASaZtPbh5QxepZLsdPPEaXg

Its been several months since I’ve posted anything in my blog, but this news piece warrants my response. This is only my opinion on this subject, as someone who has chronic pain and as one  who uses opiates for the relief of that pain, I have something to say that’s important on the subject. The very first thing I noted in this article was the use of the words words, “addicted or dependent”.  After 16 years of use for my chronic pain I am dependent on opiates. This is very different from someone who becomes an addict, and until this difference has been statistically weeded out we need to stop blaming people with pain and they are doctors for the epidemic of addiction.blaming people with pain and they are doctors for the epidemic of addiction.

 

I have stated in previous blogs that the other medications that have been developed in the last decade don’t work for me, that doesn’t rule out that they work for other people because they do. One of the main tenants of getting rid of using opioids for chronic pain is that there are other medications out there, does this meanthis mean that everyone needs to stop using pain medication because there is the chance of addiction?  No. The reason is exactly as I stated above the other medications don’t work for everyone. Does this mean that doctor should be very clear about trying other medications first, yes I believe they should.  Does this also mean that doctors should be very clear about what opiates are and how they can affect your body, how one can become dependent on them, yes they should. However, I for one am not am not willing to take the blame for people who become addicted. If anyone should take on this  plane game, it should be the doctors who don’t monitor their patients use closely.

When,http://www.prescriberesponsibly.com/articles/urine-drug-testing

In addition to using opiates, I use alternative methods of self-care as well. I’ve written and lot here about having a tool kit of methods to help one deal with their chronic pain. Any responsible doctor would offer these tools to their patients . But as the doctor and patient relationship develops over time, each patient will be able to use different tools differently at different times and the doctor needs to understand that. I’m not sure that it this point in time  doctors really understand this clearly. In the end I think it comes down to doctors being better educated about chronic pain in general and the different ways in which patient can help themselves, doctors can help patients and the different ways that patients may or may not respond to different methods.  The relationship between patient and doctor is always a two-way street. If you don’t have a comfortable give-and-take relationship with your doctor I suggest that you find a new doctor, one who is willing to explore over the years with you different ways that work at different times without judgment.

What do you think about this subject what do you think about this subject?

I Can be Distressed or I Can Practice Acceptance

My partner and our daughter (27 years old) left  yesterday to go to Disneyland. They haven’t been for more than 10 years and this is kind of the trip of a lifetime for them to share as adults. They both really enjoy Disneyland, while I don’t as going on rides is just too stressful and causes too much pain for me.  I stayed behind to take care of our daughter’s cats and my dog. I had to rent a car in order to do this. It’s a wonderful car with leather seats, electronic starter ignition, and well I was thinking that I might take a small road trip over to the beach. Instead this week is going to be filled with more rain. We all know what weather changes bring, pain.

I could feel very upset about this development. And I do feel a little bit sad, I also feel a little upset about renting a car and not using it.  This is a perfect time to try and practice what I’ve learned in the past; in the winter I have more pain and there’s no point in getting upset about it. That doesn’t mean I don’t get upset , I do, but dwelling on that feeling is not helpful when you’re in so much pain you can’t get out of bed. So while they’re in Disneyland my Rent-A-Car will sit outside and look beautiful and I will remain cozy with blankets and the cats and dog inside watching marathon episodes of who knows what on cable TV. It’s a perfect time to begin to process acceptance as winter is here and it will only get more brutal.

I’m sure there’s other peers of mine out there practicing the same thing today, so let’s all practice together.

PS, I used text to talk for this blog so forgive any errors. Have a great week and I’ll get back to you later, dear blog.

 

 

 

 

 

New Research using FMRI to “View” Brain Functions in Fibromyalgia Patients May Hold Hope for Future Treatment and Diagnosis

A respected fellow blogger posted this study today. I read through it,  having a background in reading research studies, I found this one to contain some real merit. There is still much more to study; this is sound imagery, seemingly combined with sound testing to achieve the results, however, it is a first step in many needed to actually assist us chronic pain peers at the doctors office.

I don’t have full access to this journal study in “Pain” and would feel more hope for future medical help if I knew the exact procedures used, duration, and patients symptoms combined with length of suffering. That stated, I in no way feel the research should be discounted, it should be used as the building block for continued tracking of our brain and central nervous system signals.

How the medical community will apply these findings to our treatment remains a huge unknown as well. But, a first step is always better then not stepping!

With Hope Today,

http://www.neuroscientistnews.com/clinical-updates/neural-signature-fibromyalgia-may-aid-diagnosis-treatment

Sharing a Link to Research on the use of Complimentary Medicine

Hello Peers,

I receive email updates to the work of the “National Center for Integrative and Complimentary Research”. Their research usually relates to us, chronic pain suffers.  This one is interesting, but leaves a large question that should be answered, “what do we use them for?”. Emotional health, social health? In my experience all the peers who use these methods use them to help relieve their levels of pain. Anyone have another answer?

https://nccih.nih.gov/research/results/spotlight/us-musculoskeletal-pain-use

 

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😘

Saturday Night, Live.

I love this perspective! She has written so simply yet eloquently about all the positive thought processes I blog about!
Thank you Mary,
XX
Lucinda

Fibromy-Awesome

It’s 10:21 on a Saturday night, and I feel happy to say I’ve progressed beyond feeling sad about not being somewhere else, somewhere interesting; a party, an event, socializing anyway. I am simply here, home, Monty nursing a busted paw and me trying to avoid the cold most of my family has succumbed to. There was a time not so long ago where being alone at this moment would have a certain angst to it, some restlessness that I should be out, I should be doing something. And I can’t say that struggle is completely over, because it’s not. Not having daily expectations and tasks is oddly work in itself, at least psychologically, if not just a certain re-education of everything I’ve learned about what it means to be important, what it takes to matter. I am still learning those ropes and how to keep a solid hold on my psyche…

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