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 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?

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

Patterns, Light, and Fibromyalgia; A Symptom Often Unknown or Overlooked by Physicians

http://www.fibromyalgia-symptoms.org/vision-and-fibromyalgia.html

I went to my doctor’s office last week to deal with a sinus infection I obtained from the flu. I already felt incredibly tired just getting to the office and was not prepared for what I felt next; it’s not something I consciously notice that often anymore. I was ushered into a room that was on the 10th floor with a great view overlooking our hills and the city. I was asked to take a seat on the patient table, which I did. I looked up as the nurse assistant closed the door and my eyes went bonkers. There on the wall in front of me was a bright yellow paint and a chair with bright yellow circles centered in the middle. The entire bank of windows, on two sides of the room, were covered in blinds that were open with slats, but not raised.

I tried to stay seated on the table but got up after only two minutes. I felt dizzy and my head was now aching. The circles and slats were jumping up at me! When my doctor came in, I explained why this was not a great room for fibromyalgia patients. He said he thought it was a nice room. When I explained about patterns and my perception, along with the consequences, he reacted as if he had never heard of this before. Overwhelmed with being ill for some time and the new infection, I let it go. However, it struck me that most general physicians do not know about this symptom, despite the reality that for us, it is a very important symptom.

The manner in which certain patterns effect my pain and create a sense of being overwhelmed is something that I deal with every time I go out. I have learned to take in visual information in pieces, I have also learned that when I already feel flared it is time to create a boundary when shopping.

Department stores are at the top of my list for pattern overwhelm. Whenever I enter one, I quickly go to the area I wish to look in and ignore the rest. If I plan on being inside one of these overwhelming areas for longer than a half hour, I already know I won’t be doing much else. Patterns create headaches for me. They also literally make my eyeballs feel like they are bouncing to a disco beat. This makes it next to impossible to make a decision about what to purchase or even which way I want to turn next. They make me feel uncomfortable, they make me feel like I am losing my balance. In short, they make me feel horrible.

Any task that I need to do when my pain is higher than a level 3 is increased in its difficulty when it involves stacked, colorful, patterned objects. Groceries, driving (especially at night), department stores, walking, even sitting all become twice as hard or even simply unbearable. As I stated, I have learned to compensate. However, considering how much it effects me, why doesn’t my physician know about this symptom? This question leads me down another path of exploration. My cognition issues after being rear-ended.

I still have cognitive issues, three years after being rear-ended. It mostly involves multi-tasking, multiple “things” going on at the same time that demand my attention, and problem solving. I can solve problems but I need additional time. Sometimes, until the next day or longer. Getting back to the patterns exploration, I have been told that my PTSD caused my cognitive issues, but never that my fibromyalgia might also play a part as my eyes already struggled not feel overwhelmed. For the majority of the last three years being overwhelmed was a 24 hour a day feeling. Of course this was not all my eyes, not at all, but what if they played a part that I could have managed? It would have been good to have a doctor talk to me about this symptom of my existing fibro and direct me to create a tool to help manage it.  Ah, doctors. I just have to smile.

Lyrica and Lawsuits; Off-label uses, fines, and Research Empirically Showing the Drug Inhibits New Brain Cell Growth

Dear Peers

Please research this! I received a informative article in my FB account and wouldn’t you know it, my phone is acting up and won’t copy any of the valid research sites I have gone ti in order to verify the tale. Type in the keywords above and get ready. I have been personally speaking out against this and other “black label” medicines since I began my blog.

Did you know in 1994 the Pitfizer company used this for migraines and bi- polar issues? Did you know they had the largest ever fine levied against them for their black market label usage?

I encourage you to do your homework and make an informed decision about your health tools. Whatever you decide, at least you will be aware.

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.

 

 

My Encounter with a Health Professional: Practical Advocate Lesson

 

Chronic Pain Hint for Advocacy

Advocating with your various medical professionals can be daunting to those who are already worried that their invisible pain syndrome won’t be taken seriously. It can double in agony if you have found a doctor but are afraid to rock the boat of the relationship. I have, unfortunately, way too much experience in dealing with this double edged sword. After 17 years, I am no longer afraid. I am actually more than willing to find a medical professional who understands me, who listens, and who has the ability to understand that my syndrome affects me differently from others; translated, I am sorry doc but I do need different treatment from your “regular” patients.

I have blogged about being your own advocate many times before. In this blog, I am going to relate a real, and personal, story about my advocating with a new medical professional; one that I thought already understood my medical issue. As it turns out, I was not only completely wrong but was caught off-guard at the worst time. The professional is a therapist who is helping me with my PTSD from a rear end motor vehicle incident (MVA) that occurred two years ago now. A big piece of this emotional nightmare arouse because my fibromyalgia basically doubled, leaving me with a Master’s degree and no way to work.

When I first was diagnosed with our syndrome, I spent three years figuring out how to get my life back on track. It took a lot of hard work on my part, discovering my passion and, keeping a positive attitude. I went through my own, private, grief process over losing my life as it knew it before, but never anything close to PTSD. The MVA tore into my psyche, leaving me absolutely numb and left with the knowledge that my future as an independent therapist was probably never going to happen. I am now working on these feelings with my therapist, but on this day I almost walked out the therapists door five times. Instead of walking, I continuously re-gathered my thoughts and advocated the hell out of her problem.

Scene. I hadn’t been in for three weeks, two weeks of the holiday season and the last week, I had been doing just what we discussed, following the weather and cancelled my appointment two days in advance based on the forecast that we were in for a massive storm. I rescheduled for that same week, different day. Scene. I walked in and sat down, paid and waited to discuss how the heck I could get out of this mindful less issue  and start my life again. Instead, the therapist began a discussion, that lasted my entire fifty minute session, about how it was the Super El Nino winter, I could be put on a waiting list and if she had a opening she would call to see if I was available, or, we could just put off treatment until perhaps April! After-all, she had a waiting list of other people who would be consistent and when I signed the agreement I agreed to pay for any missed sessions. Never mind that I told her two weeks later that with the impending weather pattern this would not possible, and, she agreed.

The statement left me in shock. I have never had to pay for missing a doctors appointment, never. Somehow, they have all understood that I have pain in my body that is out of my control. I have had to call them as late as two hours prior to an appointment to cancel and never have I heard anything but, hope you feel better soon. Maybe you are thinking here that I have been lucky. Nope, I have advocated with all of them. So, back to scene. As soon as the initial shock wore off, I began. How exactly would it help me to wait another four months to begin healing? How is helping me to heal by coming in completely by chance? After-all, if she had new patients, odds are they would fill her time. How much have you actually done what I asked and researched fibromyalgia? How would you feel right now if you had fibromyalgia, add a screwed up right knee from the MVA, PTSD, doubled fibro, and gaestroparesis? Do you know how often peers with fibromyalgia get dismissed because our pain is invisible? Yes, I look all groomed; make-up on, jewelry, nice outfit, it all looks good on the outside, but that has nothing to do with how my body feels today, on one of my ok days. Oh, you wouldn’t want someone coming in with the flu, but if I have a medical condition that the barometric pressure affects, causing me intense pain and brain fog, that’s ok with you?

I am now 30 minutes in and the roles have reversed. I am now her counselor on medical issues. And, a bit on therapy. I asked her why she waited to take up my entire session on this after we already had an agreement? I asked her what she would do if she had a patient come in with a condition she was unfamiliar with, wouldn’t she spend time researching the best methods to help that person? And, the flu was understandable, but if someone had a heart problem, or diabetes, or, or, and couldn’t come in a few times, would that be alright? After all, those are also invisible medical conditions.

Scene. Roles switched, compliment given to me by her and agreement reached. I understood she had a business and if I missed two in a row, then I would pay my co-pay for one of the missed appointments. Apparently, although she did not admit it, she had the three weeks in a row in her mind; she cancelled one, and the other was “open” during the holidays, in consideration of which I cancelled four days ahead of time. Lets face it, the holiday season is hard on the medical profession. She agreed to do further, more in-depth research, on forums and blogs, to understand what we go through. She agreed she should have done more before. She agreed that she should have emailed me.

The question remains, do I feel a safe rapport with her now? Time will tell. I hope this personal glimpse into my story of polite, but pointed advocating for myself, will assist you to help yourself.

Fibromyalgia, What Peers Should Know About Medical Marijuana Use

 

Lately I have been watching a series on Netflix that brought up questions for me about medical marijuana use for fibromyalgia pain survivors. When I spoke with a person I know who works at a local medical dispensary for medical marijuana, my concerns became greater. In asking further questions of her, I discovered how to share answers with you that will assist anyone who is, or desires to use medical marijuana in any form to help lessen their pain.

One issue that concerned me after watching one of the episodes was the term used, “overdose” in respect to marijuana. There is no such thing. Overdosing means one is at the point of, or has, died from drug use. You can not die from marijuana. You can however, smoke, eat, or use too much of a marijuana tincture. If you ingest too much for your tolerance,  breath, drink lots of milk and eat; wait it out. Of course this is not your best option, so here is how to remedy it before it ever occurs.

First, it needs to be broken down by category of medical means of usage, edible, smoking or tinctures. I am not discussing creams, either CBD or THC, as they do not penetrate the bloodstream and therefore are not a concern. Each type of product has different concentrations of THC or CBD in milligrams.  All these products will be either CBD or THC dominant; there is a ratio of both, with the one you need, or want to use, being higher. The mixture of 30:1 is there to create the chemical reaction. The first numeral should be the one you wish to use, the last, the mix for reaction. The smallest dosage that would be suggested to use within this products is 5 milligrams, however, if you have never used this start with 2.5.  Another point here is too complex for me to understand, but one you should know  when smoking medical marijuana , is that there are two main types, Indica and Sativa. Both have different types of uses for pain and differing reactions.  You should have knowledge of this, or a knowledgeable dispenser to assist you if this is your method of use. I do know that one hit is basically equivalent to 5 milligrams.

Before I talk about the two remaining types, I would like to hand out a warning that I am fairly confident applies everywhere, not just here in my metro area. My friend informed me that in the dozen dispensaries she has visited, only her place of work actually asks each patient how they feel that day and what they type of relief they need that day. Her place of work stresses intense self-education along with constant interaction between the workers to understand their products. When they receive new products, they are informed about them, so that they can inform their patients. The other dispensaries rarely ask about health every time, or at all, and often do not know anything about their products and pain. This is a warning to all of you; find a dispensary that is really in the business of helping your pain; not using the loophole to sell marijuana. This doesn’t mean they don’t have the same or similar products, but they are just not doing their legalized job or, they have not been told they need to as they are in fact, more like legalized recreational sellers.

Now let’s discuss edibles. They usually are THC in nature. THC does help with pain, but it will probably make you fall asleep for at least your first month of use. Edibles  sold at her work start at their lowest milligram dosage of 15 milligrams. This means if you are new to the whole using medical mj for pain relief that you might want to start with 1/6 of the edible, or 2.5 milligrams to see the effect. Additionally, when you eat something, it has to go through your entire system until you feel the effect. Wait an hour at least, hour and a half to see how this affects you. Don’t plan on going out or having company unless you want a friend there for support in case you don’t like the feeling and have to wait it out with milk and mindful breathing.

As I have previously discussed, smoking medical mj is beyond my basic understanding, so lets move on to tinctures. Tinctures can come in CBD or THC also. Both have their place in dealing with pain. Both are effective, however, THC is more sedating. CBD is relaxing. Some may wish, as they progress, to mix a few drops of both, depending on their pain needs. Again, the suggested dosage is 5 drops equaling about 5 milligrams. It can come in an alcohol or olive base. The suggestion is if your new to this pain relief method,  start with two and half drops. All the same information about staying at home applies here. The difference is that you are now taking something sublingually.  This means it has an immediate effect as it goes into your gums and right into your bloodstream. And, don’t forget that the CBD tincture is also made from huge vats of hemp which can be ordered online no matter where you live.

I hope this professional knowledge, from a dispensary worker of medical marijuana, assists those peers who wish to, or are, using it to relieve pain. I hope it helps any concerns about “overdosing”. I also hope that one day there will be legislation that requires all workers in dispensaries must be trained to help each patient, each day, with trusted and updated knowledge about their products.

*I am not affiliated with any medical marijuana dispensary, I am not an expert on this topic. Consult a doctor with any medical concerns.

Follow-Up to Doctors Who Decide all our Medical Issues are Fibromyalgia; Research Supported

Multiple Invisable Illness Picture Tags

http://chronicillnessmemes.tumblr.com/image/68706035015

Several, but not all, Related Medical Issues That are not Fibromyalgia; Research

The above link is from research done in 2015. It is very useful when we are trying to discuss our medical issues with our doctors.

6 Steps to Help You Take Control of Your Relationship with Your Doctor When You are Experiencing “other” Medical Symptoms

This is a “must read”!

Hello Peers,

I recently wrote a post about doctors lumping all our complaints together once we are diagnosed with Fibromyalgia. After receiving a comment from a kind lady yesterday, this issue haunted me again. It inspired the first research posted, which then lead me to find the wonderful and helpful tips of how to have a fruitful conversation with your doctor about other symptoms. Being empowered to talk with our doctors without fear is very important; I blog about this often.

I don’t think I could offer better advice then the two links above give to you. I will leave you to read through them, they are very easy to understand. As I leave you with them, I will stress that unless we take control of our health, we may lose more than we think. As we have already lost our first life, and learned to live with our new second life, please, let’s not start a third or fourth life.