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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The New CDC Guidelines and my Thoughts on how it Might Impact Fibromyalgia Survivors

CDC Link to Statistics on Prescription Drugs and Overdose

NIH Medline Plus Article on Prescribed Pain Medications and Doctors/Patients Roles

2012 Link: NIH Medline Plus Article on the 5% who Overdose on Prescribed Opioids

Note: The NIH link supports the CDC link that states that overdoses due to prescribed opioids dropped in 2012. The CDC notes that during this time frame, and up to the present time, prescriptions were also less. One item that would help to us to understand the CDC’s report is giving statistical information on how much this drop in prescriptions was/is starting in 2012.  Was it also 5% as stated by the NIH? Personally, I am wondering if it coincides with the timing of the introduction of Cymbalta and Lyrica. It seems to me that these medications exploded in the prescribed med arena about then, a few years after it was approved by the FDA for use in both depression and chronic pain. The same, or many similar, pathways in the brains of both depressive disorders and chronic pain react to both medications. However, they address different issues. Both of these medications come with a very long list of concerns the user should pay attention to, including “suicidal thoughts or actions”. I will leave you with this thought and continue on with my considerations in what is happening in the medical arena and my thoughts on how these new guidelines may affect us.

Hello Peers,

As promised a few days ago, I am going to do my best to address the new guidelines from the CDC concerning how to, or if opioid prescriptions should be written by doctors for any chronic pain other than cancer. These are my thoughts on the subject (I have not performed any empirical research, only added trusted links to sites that do use empirical research).  Please remember that I have posted previously that there are alternative methods that work for Peers, along with lifestyle changes. This post is strictly addressing the new CDC guidelines.

In reviewing these two links above, I discovered data within them that makes sense to me. I discussed a part of what may have occurred in the note section after the second link; the emergence and ever-widening prescribing of medications intended for depression, but now often used for chronic pain management. The link to NIH’s article discusses the need for practitioner education about opioid prescriptions and the importance of monitoring their patients for the possibility of addiction that leads to overuse, and, overdose. To be fair, there may be further links in the CDC articles that also discuss this.

Interestingly, this post is very similar in content to my post yesterday concerning monitoring co-morbid mood disorders when prescribing opioids. There will always be those who have co-existing conditions that may lead to emotional addiction and not just physical dependence, but abuse. These guidelines help push us towards the creation of  the need to check the patients past history for a known history of mental health conditions and implementing a full intake history to discover any potential genetic, behavioral or environmental factors to follow-up with in discussion at each visit. That takes this subject back to the need for educational classes for Fibromyalgia diagnosis, posted a while back. The emphasis of the outcomes of these two studies show how important it is for the pain patient to be honest with their doctor if they do have a co-morbid condition that could lead to abuse. The importance of scheduling a visit every month with your doctor, bring your medications, and sign a pain contract. While you are there always briefly discuss with your doctor how your month was; social activities or lack of, exercise, and any event that increased or decreased your pain.

I have always done this my doctors. I wrote down notes about my month, my pain levels and what caused the increase or decrease, along with a count of how much was left of each separate medication and then divided it into days left to refill, beginning with the request of my first doctor. He then added my letter into my chart. I have never obtained refills on opioid medications, except for a few months when I traveled. It is part of my monthly chores to visit my doctor every three and half weeks to obtain my next refill. I began this monthly ritual 14 years ago. The CDC guidelines may create requirements like this for all pain patients. It should be a heads up  that we should all begin doing this on our own (if you’re not already), and even suggest a pain contract before the doctor does. This is being proactive, taking control of our own bodies and could help to decrease fears about abuses for all of us.

The NIH article is suggesting that this  relationship with our doctor, along with increased doctor education and visits should be mandatory in chronic pain patients.  The CDC article is simply following their history of trying to prevent death from overdoses, be it from prescribed medication or illegally gained medications and street drugs that can cause overdose. It is also not new that prescription medications are being attacked for overdoses. It is easier to address something you can track like prescription medications; try tracking the amount of illegal street drugs and overdoses, it is not nearly as simple as pulling records from doctors, pharmacies and hospitals. It will not stop being discussed and their guidelines will continue to be handed out on this subject. I applaud it. If you have ever experienced the pain of loss due to a friend or a family members overdose, it is horrible.

I found in the literature that numbers have gone down for the last three years; in overdose and prescriptions. What I don’t find, but believe is very important in this discussion, is how people are obtaining medications they don’t need and how many people in chronic pain who are denied assistance turn to street purchases of pain medication which could play a part in the overdose count by the CDC. This is much more alarming to me then the idea that all doctors should be better educated when assisting chronic pain patients. Especially monitoring their paitients who may begin to show signs of addiction. I am fairly sure, but could be wrong, that there are more overdoses from street drugs by addicts than there would be from prescribed medications if these methods were used.

The CDC sounds this type of alarm every decade. Their current alarm is focusing on pain medications. They have focused on this before and will again, with good reasons. There is not enough practitioner education about chronic pain, pain contracts and how to monitor  patients in case they fall into that 3-5%  of persons who might become abusers. Pharmacies have the ability to track every prescription from every pharmacy in at least 48 states, but, do they?  Why don’t pharmacies and doctors interact closely in tracking the filling of prescriptions by patients? If any abnormalities showed up in the pharmacy tracking system, alerting doctors would help enormously to avoid abuse and possible overdose. Both would also be able to flag the patients who are obtaining opioids under false pretenses. I believe strongly that the prescribed chronic pain patient overdoses would fall by a large percent if this was incorporated.

http://www.nh.gov/pharmacy/prescription-monitoring/

I am not overly concerned at this point in time about the CDC creating these guidelines. If I become alarmed or, if you are already concerned, take action. Advocate for yourself and your Peers. Find a petition or create one online and send it not only to the CDC but to your doctors group, insurance company and pharmacies, suggesting these or other reasonable items to include in chronic pain management.

If I responded well to the newly created and prescribed anti-depression drugs, I would take them! But, I don’t. I take opioids and  have created a Well lifestyle, integrating alternative therapies, understanding my triggers, using exercise, and I spent years journaling my every daily activity and corresponding pain levels in order to reach the functional ability I currently experience. It’s not perfect, but it’s much better than the first several years. I hope that all the Peers find their answers, using the treatments that works best for them.

Pro-guidelines and education for needed chronic pain treatment,

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Advisor