Regarding Bupenorphrine – Suboxone


This information is “straight from the horses mouth”…please read this chronic pain patients horrific experience (he wrote this after reading my last blog post in one of my support groups):

Absolutely, I mean absolutely do not ever let anyone put you on Suboxone or buprenorphine – the primary component of Suboxone – when they try and shove you off of opiates because the stuff is absolute poison.

When my pain pump ran out of morphine sulfate after I lost my pain management doctor, thanks to the new CDC guidelines, I went into acute opiate withdrawal and ended up in the hospital. In the hospital they were supposed to detox me from opiates, they did not. Instead they pulled a really shitty bait and switch, and put me on Suboxone. Suboxone is extremely addictive and 10 times harder to get off of than conventional opiates, and much, much uglier.

I know this from personal experience. Getting off of Suboxone or buprenorphine – its active component – is an absolute nightmare.

For example: I can take 15 mg of hydrocodone – hydrocodone is the opiate in medications like Vicodin and Norco – per day for six months solid and I can just stop taking it, cold turkey, and I’ll feel kinda crappy for three or four days, I’m off of it, end of story.

After a single month of taking 16 mg of Suboxone per day, I have now been trying to wean myself off of it for nine weeks, every step of the way has been absolute hell, and it will take me at least another 2 to 3, possibly even four months to wean myself off of it. And then, I understand, I can expect to spend another couple of months feeling significant withdrawal symptoms even after I have stopped taking Suboxone/buprenorphine.

This has got to be one of the worst medical scams ever. I would compare using Suboxone to get people off of opiates to using whiskey to get people to stop drinking beer.

Suboxone is also hideously expensive $370, for a 30 day supply.

A 30 day supply of four Norco 10/325 per day is only $33.

If you get just straight buprenorphine – the active component of Suboxone – you can get it for about $90 for a 30 day supply.

The cost is actually the least of the worries where Suboxone/buprenorphine is concerned. If you are a longtime junkie who was been sticking a needle in your arm for years Suboxone may make it easier for you to get off the needle.

If you are a chronic pain patient who has been taking opiates for your chronic pain and they are going to cut you off of your opiates, you are far better off going cold turkey – hopefully your doctors will allow you to wean off of the opiates – and skipping the Suboxone/buprenorphine hoax because getting off of it is 10 times harder than getting off of conventional opiates, and the nightmare from hell every step of the way. It is hideously ugly.

I don’t know how to say it any plainer than this: Suboxone/buprenorphine is, in my estimation, absolute poison, and one of the worst travesties of medical mispractice ever perpetrated on the American public. it is a scam to make a pharmaceutical companies rich.

When it comes to Suboxone/buprenorphine: just say no.”

***Today I opened up Facebook to find this response regarding my article from July 31, 2018. That’s is where I discussed Suboxone, Bupenorphrine & Naloxone. Please refer to that article (July 31,2018) if you need to “fill in the blanks”, so to speak.

I thought I would add his comments here. To be fair to all of my readers, I will also post my responses. I want you to know my reactions and the words that I used to make sure that my original post is not “confusing” to anyone else.

Here are the words that he wrote underneath my article that was posted in my CRPS support group on Facebook; called “RASEforCRPS” (the letters represent the words: Reserach, Awareness, Support & Educate) (*it was also posted in other Various groups & pages) :

I’ve been safely and effectively using plain Bupenorphrine, an opioid, in the form of Butrans patch for several years! I have also used the antidepressants and have been fine with both.

Each of my docs can order it without certification or special classes. It HAS been approved by the FDA for severe pain that needs round-the-clock management.

There is a lot of different info out there and there are other medications with Bupenorphrine in them. Here is some info! Here is a pharmacy times article about this:

“Belbuca Is the newest formulation of you been or for an available as a buckle films and indicated for the management of pain requiring around -the -clock, long-term opioid treatment not adequately controlled with alternatives. This reflects the new standard labeling required of all extended-release of yours indicated for Chronic Pain.”

“Buprenex IV or IM is approved for the relief of moderate to severe pain. This formulation is also used off-label for the treatment of opioid withdrawal in heroin-dependent hospitalized patients.”……..(you can read this article in its entirety here: Pharmacy Times article * that patient also gave this article for reference: Second article given to me by that patient

*******Here was my response to her post underneath my article:

The writers of your one article make the medications you are being prescribed. The information I have is from several trusted news organizations, and our government has been saying for years how big Pharma has downplayed the negative affects of their products. Lastly, I’ve known people who say that it’s much worse to stop taking (Bupenorphrine/Suboxone) than others that are not agonist-antagonist opioids. All I’m saying is that if you want to take that medication, even though it’s not approved by the FDA; you should have the choice to do so! But if the other kind of long extended release Patch has worked for other people, including myself for over a decade, then I/they should be able to keep the medication that has worked and hasn’t caused any problems for me whatsoever! I also have at least six or seven different articles where I found my information on the Internet.

There’s also this information below, which says the medication can be used for pain/refractory depression for “off label use” (then why can we not use the fentanyl patch for off-label use?)… there’s also contradictory information and most state that it’s ” only a low analgesic at best”!

In this article here Bupenorphrine- Naloxone Therapy in Pain Management , it states that these medications In the past few years, they have been increasingly prescribed off-label for chronic pain management. The current data suggest that Bupenorphrine /Naloxone may provide pain relief in patients with chronic pain who also have opiate dependence or addiction. However, the pharmacological profile of this medication states that it is a weak analgesic that is unlikely to provide adequate pain relief for patients without opioid dependence or addiction.

Therefore, just as I stated in my original article, these medications are probably OK for people who are struggling with addiction to opioids. But if you do not have an Opioid addiction or an opioid use disorder and you’ve been using the same opioids for Chronic Pain for many years, and they still help to give you a semblance of life & relieve your pain, then you are not an addict. So the Bupenorphrine /Naloxone may work for low analgesic pain relief in addicted person but not in chronic pain patients. That’s what I tried to state in my original article as well. I also said that the company (*Reckitt Benckiser) that is responsible for making the medication Suboxone/Bupenorphrine started this whole fake opioid crisis so that they could have a monopoly on this medication and get rid of all opioids. Therefore it was a “get rich scheme” for them.

Lastly, I’ve copied and pasted for you, only one of the warnings for the buccal Butrans patch:

The risk for serious, life-threatening or fatal respiratory depression. Physicians should monitor for respiratory depression, especially during initiation of the treatment or after a dose increase, the company said. “Misuse or abuse of Belbuca by chewing, swallowing, snorting, or injecting buprenorphine extracted from the buccal film will result in uncontrolled delivery of buprenorphine and pose a significant risk of overdose or death,” the statement adds.

• The risk for accidental exposure. “Accidental exposure to even one dose of Belbuca, especially by children, can result in a fatal overdose of buprenorphine.”

• The risk for neonatal opioid withdrawal. “Prolonged use of Belbuca during pregnancy can result in neonatal opioid withdrawal syndrome, which may be life-threatening if not recognized and treated, and requires management according to protocols developed by neonatology experts,” the statement said. If prolonged treatment is required in a pregnant woman, “advise the patient of the risk of neonatal opioid withdrawal syndrome and ensure that appropriate treatment will be available.”

After reading the warnings on these medications I don’t see why they are any better than regular opioids or the fentanyl patch? All medications, including heart medications, Coumadin & chemotherapy, come with warnings! But sometimes the benefits outweigh the risks.

Articles:

1:Bupenorphrine has not been approved for pain- but possibly off label can be a weak anelgesic

2: Are there other uses for Bupenorphrine

Nowhere To Run



Going to the doctors office has never been one of my favorite things to do. When I was 5 years old, I filled my suitcase and “ran away” because I was afraid to get my Kindergarten vaccines. Now, I’m all grown up and looking forward to retirement; but I’m still that 5 year old deep down inside, more afraid of doctors than ever before. Why do they have so much power over us? Why do some use that power to make us feel inferior? Eleanor Roosevelt said “No one can makes us feel inferior without our consent”, but I feel it and I don’t remember giving anyone permission? We are living in difficult times for anyone who has debilitating, intractable chronic pain. There also is no place to “run”, no matter how big your suitcase is or how much money you have. There’s no grandparents at the other end to scoop you up and tell you that “it’s going to be OK”. Mostly, because it’s NOT OK.
Have you ever seen an action/crime movie where an innocent person was being tortured and/or thrown in jail, for something they did not do? A person being “beat up” but totally innocent? This is what is happening to the chronic pain patients in America today. I’m going to share a short story about what happened to me the other day. We always think these things only happen to “other people”. That “it won’t happen to us”. That is wrong and untrue. We live in a civilized nation, or do we? How can they treat us like this?
Here is a summary of what happens to me every 30 days. Each time I have to visit the pain Dr.’s office, I get physically ill, worse than usual. A few days prior to my upcoming appointment, I get more frequent stomach aches. I want to stay inside more and just sit in my “Lazy Boy” chair, with my blanket and with my cat cuddled up next to me. I wonder if “this will be the visit that “it” happens to me”? As the appointment time gets closer, I get more clingy to home and all things comfortable to me. A fear deep inside of me grows worse and worse. Then the morning of the appointment comes. I get nausea, dry mouth, diarrhea and I don’t want to leave my house. I cannot leave because no matter how much I talk myself out of these feelings, they won’t go away. My blood pressure, which has normally been low to normal, is very high for me at about 150/95 to 155/100. I feel sick and afraid. But I’ve never smoked anything and I have never taken any kind of medication or “drug” that was not specifically prescribed to me by a licensed physician.
The time of the appointment grows closer and I get even more distressed. Sometimes I cry and I just verbalize to my husband that “I don’t want to go”. I wonder why is life so cruel to those who are already living with agonizing pain and illness? I’m not one to feel sorry for myself. I really trust and like my pain Dr. too, don’t get me wrong. But I know he’s not my “friend”. He has heard every excuse in the “book”. He has no reason to believe anyone and he must go by what he sees in text. All day long other people have ruined it for the “good patients” who don’t deserve this kind of questioning, contracts and treatment.
It’s time to leave the house. But I cannot leave the bathroom. I take a bucket with me because I don’t want to vomit in the car. It’s a 30 minute drive and my painful RSD/CRPS feet are shaking even though they hurt. I cannot control it. My husband chuckles, kindly telling me that I’m “shaking the entire car”. We arrive at the pain Dr.s office. There are cameras everywhere, in the parking lot and in the office. For all I know, theres one in the restroom? I know that I left a urine sample last time, so I feel pretty calm about that not going wrong. I had not heard from them, so Im just sure that there’s no “false positives” with me. That only happens to other people, right?
We sign in at the front desk. I answer the several questions that I am asked every 30 days now. For crying out loud, what changes in 30 days? It’s just too often to put people through this, aside from the cost. My name is called and my stomach is in knots. I’m sweating and sick to my stomach with my heart is pounding. I feel afraid and “guilty”. I hear the footsteps faintly coming down the hallway and then a knock at the door. I calm my inner fears and I tell myself “Suzanne you are a good person. You’ve never done anything wrong and you follow the directions exactly. This is crazy, why are you so afraid?” I’m afraid because of the horror stories of others who are also innocent. The pain Dr. enters the room and asks me the same questions each month. Every 30 days, the same dialogue. But this day I hear different mantra than usual. I feel as though I’m in a tunnel as I hear these words “Your urine test came back positive and I had to send it out to another lab. In case you wonder when you receive a $200.00 or $300.00 bill from an outside lab. I just wanted you to know.” I started to cry and then I was asked “why are you crying?” Next, I was informed that no matter how long he’s known me, if the test had ben positive, I would be kicked out of the practice with no place to turn. Innocent or not, I would have been “guiilty”. It doesn’t matter that these tests are many times false positives and false negatives. Nothing matters anymore. The truth doesn’t matter any longer. I was literally terrified just hearing those words come out of his mouth. I asked him “What could it be positive for? I did not do anything different?” He proceeded to tell me that I tested positive for PCP and Oxy-something? But I don’t take those! I don’t even know what “PCP” is? I had to ask and he did not answer. He could not understand why I was crying uncontrollably and inconsolably.
We had received a $265.00 bill from a lab just a few days prior. We were going to call because we thought it was a mistake. Now we are supposedly responsible for this very large bill. I never signed anything promising to pay for all of those tests? But what happens if I fight it? Next time there is a “false positive”,they won’t perform the tests, therefore I won’t be exonerated and I will be kicked out for no reason whatsoever? It was explained to me that no matter who I am, how exemplary of a patient I might be and no matter how long I’ve been going there with a perfect “record”. I will be treated as if it were my first visit and there are no second chances. We are perceived as “guilty, bad and lying” if the tests says it is so. Yes, there is a second test, but then you are hit with this grossly overblown bill and there’s no way to pay for it. The second test, of course, came back negative and I was exonerated. He told us that his regular office urine test has a “90 to 95% accuracy”. So that means every once in awhile there can be a glitch or a mistake. That means that every once in awhile someone gets hit with this huge bill, through no fault of their own.
I am tired of people telling me that I should not be on this medication. People who are supposed to love me or at least care about me. It feels like nobody understands the predicament we are in. I take medicine that still helps to relieve my pain even though I’ve been on it for quite awhile. I have almost no side effects and I’ve tried many many other medications and therapies first. This was a “last resort”. It helps and I don’t want to stop because it gives me some semblance of a life. I get the pleasure of being a grandmother. Without it, I would be in bed or in my chair 24/7. I’ve been there and done that. I don’t want to go back. I’m tired of being judged by people who don’t know me. I don’t get a “high”, and I never take more than prescribed. Why can’t I just continue to do what has worked for me? Why can’t we all? Why do we have to feel persecuted and judged? Why do we need to feel traumatized and terrorized every 30 days, to the point of feeling physically ill?
My story up to this point, ended on a positive note. My Dr. still had to send out the first test because he said that “it is the law”. I have never done anything remotely considered to be “bad” or “wrong” and definitely not “illegal”. I’m a good person who graduated college with honors. I raised my daughters mainly by myself for about 8 or 9 years. I worked full time and took care of everything and everyone who needed me. I try to be kind, thoughtful and I am always trying to think of new ways to help others. Nobody deserves to feel this way. Theres something definitely wrong with this and someone needs to fix it.

Opioids, Cannabis And Complimentary Therapies


When our Attorney general, Jeff Sessions told the pain community to take an Aspirin and tough it out; I hope he didn’t mean those living with cancer pain, A.S., CRPS, E.D.S. and many of the high pain chronic illnesses? I’m guessing that he must have meant that more for someone who strained their back by lifting a TV or a dresser that was too heavy? Maybe not? But that’s my guess. Along those same lines are “Complimentary Therapies”. In my personal opinion, if Acupuncture works for your kind of pain, that is great. If something called “grounding”, where walking barefoot and reconnecting with the earths energy can help your pain, thats wonderful too! Whatever works to diminish your pain, that’s what matters most. Insurance companies should be more than willing to pay for these complimentary therapies ahead of any major or minor invasive or noninvasive surgeries! There should be choices available to those who want and need them. But as much as mindfulness, guided imagery and “thinking your pain away”, are awesome ideas; I don’t think they generally help to curtail certain high levels of pain and pain illnesses.

Medical cannabis is helping many chronic pain patients with nausea, physical withdrawal symptoms and chronic pain. The Marijuana Effective Drug Studies (MEDS) Act, introduced by U.S. Senator Orrin Hatch (R-UT). He has proposed a bill, (S.1803) to encourage scientific research on cannabis as an effective and safe medical treatment. We need to advocate for this bill because Medical cannabis can be helpful to some people who live with chronic conditions. The U.S. Pain Foundation along with the American Pain Society support this Act.

We are fighting for a variety of methods to help those with high pain illnesses to deal with their pain. I’ve read that Kratom is another plant based fighter against chronic pain. These can be wonderful tools to help many persons. We need to keep fighting for many different methods to help with chronic pain, because we are all individuals and what works for one person, does not always work for another. Pain patients should be able to use whatever method of pain relief works for them because individual metabolisms vary. The therapies available to us, help many different kinds of chronic pain. Each method contains various medicinal qualities that work differently in each patient. It’s also true that one specific method of pain relief doesn’t help everyone. Nobody should be forced into taking or doing something that they don’t feel comfortable with.

The same is true with surgeries and injections. In my personal opinion, these continuous injections into the spine, are just “money makers” for the chronic pain clinics who are now too afraid to prescribe opioids. Even though the CDC told us that the 2016 guidelines

were just a “guide” and they are not the law. It seems as though the majority of pain clinics and Doctors jumped on the bandwagon to demonize opioids after the guidelines were disclosed. Now we are seeing suicides go up with the decrease in prescribing of Opioids for chronic pain illnesses. It seems as though there is a correlation between the lowering of Opioid prescribing and an increase in surgeries for Spinal cord stimulators, pain pumps and nerve ablations. But no one should EVER be forced into having an invasive surgery that could possibly cause more pain and stress for these already medically fragile human beings. My physical therapist told me that the SCS means surgically putting a catheter into your spine to give small electric shocks in order make you think of those shocks instead of the pain! She told me that our brain cannot think of pain and pleasure at the same time. I’m guessing that some think these electric shocks are pleasurable? I had a T.E.N.S. unit soon after my car accident and it did help with muscular pain and soft tissue damage, slightly. I have read that they’re (SCS) most helpful in people who have low back pain, leg pain or one area of pain and not multiple pain issues (http://aansneurosurgeon.org/features/neurosurgeons-rise-address-opioid-crisis-america/).

My previous pain clinic physician informed me that the intrathecal pain pump administers approximately 1/300th of the amount of oral medication needed to relieve high amounts of chronic pain. But this is also living with a literal “hockey puck” inside of your gut forever and and depending on one person to fill it! That same Dr., told me that I would be “married to him” as a patient, for life. In my research, I have found that if your physician leaves his practice, retires or if you have complications in another city/state or country; your pretty much out of luck, in all honesty! Emergency rooms and other physicians won’t normally touch another Dr’s patient with a pain pump! Again, this is another invasive surgery where your body is being cut and something is put into your spine. Complications stem from worsening pain to paralysis. Here is an article that speaks to some of the complications (http://www.stltoday.com/lifestyles/health-med-fit/health/to-your-good-health/implanted-back-pain-pump-is-an-option-for-very-few/article_474eed95-3f54-59ca-9b9b-9f8f941c0300.html). The nerve ablation or Radiofrequency Neurotomy, means literally “burning” nerves to “create a heat lesion”, thus, making the nerves lose functionality (https://www.spine-health.com/treatment/injections/radiofrequency-neurotomy-facet-and-sacroiliac-joint-pain). Each person feeling relief from chronic pain, is all that matters. We should be able to have choices available to discuss with our own physicians.

Someone who knows our past history of illness and our current diseases. A Dr. who can discuss these different methods with us and help us determine which route is best for each individual.

This past week I read an article in “Clinical Pain Advisor” (https://www.clinicalpainadvisor.com/treatments/epidural-steroid-injections-postmenopausal-women-bone-mineral-density-vertebral-fractures/article/739080/) that touched on the issues with the Epidural Steroid Injections. After having many of these injections in the first years following my car accident, now I find out that they cause decreased bone mineral density and increased risks for vertebral fractures. It appears that there are complications with every method of pain relief. We just need to be able to choose what is best for our own body. Nobody should be forced into surgeries, Acupuncture, Marijuana or Opioids. On the other hand, if one method, such as Opioids, have worked for you and you’ve literally tried many other methods of pain relief, then you should be able to continue. Taking a pill that has little or no side effects for a group of people who are doing well with Opioid therapy, should be still allowed and not demonized. I believe there will always be a place for Opioids for the relief of chronic pain. If you have been taking them for many years and are stable, then obviously you are not “addicted”. Don’t forget that there is a difference between addiction and dependency. Also, don’t forget to support the “Opioids and Stop Pain Act” (S.2260/H.R. 4733), introduced by Senator Schatz and Representatives Welch & MicKinley. The U.S. Pain Foundation, along with 30 other Pain organizations support this Act. It will provide $5 billion over 5 years for research of the NIH into the understanding of pain and the discovery and development of therapy for chronic pain.

Inhumane Treatment Of Pain Patients In USA


I opened up My friends blog today (“Pharmacist Steve”). It is Steve Ariens Blog; and I saw a story of torture. There is torture going on in America! I’m seeing it every day now on the Internet! More & more chronic pain patients are being treated like common criminals! This is despicable! My God, are we living in North Korea, Afghanistan or in some 3rd world country (whos people , by the way; don’t deserve this kind of treatment any more than we don’t!!)?

How can the news media @Foxnews.com, @CNN, @MSNBC and all of the rest, be so one sided? Please, I implore you @POTUS, @GovChristie @PetersforMichigan (Senator Gary Peters), @NYGovCuomo (Governor Andrew Cuomo), @onetoughnerd (Governor Rick Snyder of MI). I implore you to think of the forgotten legitimate chronic pain patients. People are now living with daily chronic pain and receiving no treatment at all. They being totally forgotten & considered collateral damage of this “fake war on drugs” ! It’s a war against the chronic pain community; because they’re the ones who are dying. The pain community is stuck with zero semblance of a life as all of this is crashing down around them/us! The posted video is not just sad, it’s torturous to listen to. It’s terrible to watch. But it’s true and it’s happening all over the United States Of America! This is a story about a young mother, wife and daughter; who’s going through sheer bloody hell in Albany New York Trauma Center!

“Amy” Amy’s story of Human Torture in a NY hospital! is a young woman who just went through a painful stomach surgery and her stomach ruptured as well! The contents are therefore spreading throughout her body inside and this causes not only sepsis, but horrible excruciating pain! My husband went through it years ago, but they gave him a Morphine pump while in the hospital for several days following surgery. He was given pain relief, as any HUMAN BEING or any living, breathing animal should have!!

This is torturous and despicable treatment of anyone in a hospital, or any patient care facility; let alone, following a stomach surgery! How can the Albany Medical Center in Albany, New York, allow their patient to be treated in such an inhumane manner??? The behavior of the nurses who pledge also, to “care for the sick” and to “do no harm”; is unforgivable! This sort of treatment to other human beings deserves termination. Those so called patient care employees need to be fired and they should never be allowed to not care for another patient! This woman, who has a name, a face, a husband & a family; is living through hell!

You know what though? This is entirely preventable! She is not a prisoner of War! This is a young woman who’d much prefer to have a “normal” life! This young woman has a name, and that name is “AMY”! She has a young child and a husband. I’m guessing that her husband had to leave her to go home and take care of their little one! He had to do that and he thought he’d left his wife in the care of a reputable hospital facility!! Obviously, he was mistaken and that’s really sad!

What if Amy was unable to show us this video? What if she was incapacitated and couldn’t tell anyone what’s happening to her? Please share this video and Amy’s story. Write to your legislators and put a name and a face to all of our stories. Nothing can change if we cannot be brave and do something to help ourselves and to help Amy!

Our government leaders, the news media agencies and society need to as many faces and hear as many stories as possible about us! The chronic pain community being left behind and treated as though we are just collateral damage in the war on drugs! This has taken a turn for the worse. It’s gone from a “war” against illicit drugs to a war against the legitimate chronic pain patients. We will lose & continue to lose if not for people being brave like “Amy”.

Please speak out and tell everyone your story and the stories like this one! Get the word out about how chronic pain patients are not drug addicts. We are not addicted at all! Ask them if they can remember a time when they had lived through their worst pain imaginable? Then ask them to think about that pain never ceasing! Tell them this is what it’s like for us, for you!

Please pass this story around. Know that I received Amy’s video & story from Pharmacist Steve Arians Blog, at: PharmacistSteve.com….. It is posted in several places on Facebook. He asked if we could “please make this video go viral”?

Thank you for your help! Please…. let’s all help Amy & all of the other “Amy’s”! Thank you Steve Ariens too!

Pain Acceptance, The Newest Lie


As I was listening to the Vox.com podcast a few days ago, I heard the voice of PROP’s president, Jane Ballentyne, surprised and complaining about how she’s been treated recently. After hearing about her belief regarding the “acceptance of pain”; several pain patients wrote negatively to her in the comments of articles and a podcast.  Some people even wrote to her employer at the University of Washington and wanted her fired, she says. I’m wondering, why she is so surprised? But obviously those who agree with her and think this is a good idea, have not lived with daily, unrelenting, horrible pain such as the kind that comes with  illnesses like:  CRPS, Ehlers Danlos Syndrome, Ankylosing Spondylosis and many others.

What I don’t understand is that in these modern liberal days of persons not having to accept anything else about themselves, why are pain patients being forced to “accept” their pain? Today in 2017, people are allowed to change their gender, nationality and  their bodies.  There’s nothing wrong with a man becoming a woman, or a Caucasian man becoming a Filipino woman; as I saw on the news the other night. In 2017, there’s nothing wrong with a woman getting liposuction on her hips, if she feels they are too big, or breast implants if she feels those are too small. If other human beings are “allowed” to do all of this, then why are chronic pain patients supposed to or urged now, to accept their torturous, horrific daily 24/7/365 state of living with chronic pain?? Now days nobody has to “just accept” anything about themselves. Something is really “fishy” here? In my own personal opinion, I feel like the United States is trying to kill off it’s weakest and most vulnerable chronic pain patients. Why do you think this might be the case? Again, my thoughts are that it is because they are concerned that the “baby boomers” are going to deplete the Medicare/Medicaid system and there won’t be anything left soon. Why not “get rid of” the sickest and most weak of Americans to save some money? I don’t know this of course, but it sure is a scary thought when everyone else is allowed to surgically change everything about their gender, race and body; but the chronic pain patients are now not allowed to have the simplest pill that can help to lower their chronic pain.  Suddenly, opioids are now being considered evil and all must be destroyed.  We must learn to “accept our pain”.  I don’t want to just accept my pain, anymore than someone who feels that they were born the wrong gender, should have to stay that way forever and just “accept” it.

So I’ve been researching other countries and speaking to other chronic pain patients around the world, thanks to the internet.  I was discussing the “opioid crisis” with my friend in Israel.  He sent me a piece of information about a University of Michigan Coursera. You can look at what I looked at here:  Teach-Out: Solving the Opioid Crisis/Coursera.  He told me that he had been seeing what’s happening in the USA and how concerned we are about the topic of Opioids.  He wanted to know if this was truth or not?   Naturally,  you must take the course to learn about what they want you to know. But just from the introduction that I read, it is packed full of disinformation. They tell the same “lies” that were exposed in Andrew Kolodny’s article “The Opioid Epidemic in 6 Charts”. Josh Bloom, a journalist and PHD, exposes how Kolodny, those that follow him, and some of the media (it seems), are changing the truth to their advantage. In his article, The Opioid Epidemic In 6 Charts Designed To Deceive You , Josh proves how in Kolodny’s orginial article, The Opioid Epidemic in 6 Charts, deceives us with false numbers.  The first sentence that Kolodny writes in his editorial states “drug overdose deaths” are about 60,000 annually. When we see that we immediately think that he’s talking about prescription pain medication overdoses. But, Josh Bloom points out that actually 30,000 people were killed.  This included all opioids including heroin.  The actual true number of deaths just from prescription pain medications or opioids used for chronic pain; was about 17,000.  Also, in Mr. Blooms article as cited above, he states that the number of 17,000 is “half the number of accidental falls”.  But 17,000 is not exactly right either, because that includes all opioid overdose deaths which were in combination with other medications.  The true death by opioid pain medications is about 5,000, according to this same article.  That is much less than Kolodny’s original “60,000 deaths”, scare tactic, from drug overdose.

Also, why are we not looking into the deaths by alcohol?  According to the NIH (National Institute of Health), the NIAAA (National Institute on Alcohol Abuse and Alcoholism) and this article Alcohol Facts and Statistics, “88,000 (62,000 men and 26,000 women) people die from alcohol-related causes annually”.  This makes alcohol the third  preventable cause of death in the United States. Do you know that the first and second causes of preventable deaths are from tobacco and poor diet/physical inactivity? So why are we not talking about the Alcohol and/or tobacco related death epidemic? Do you want to know why? I know I sure would like to know the answer. I know that my friends in other countries are telling me to come and live there. They don’t understand why this is happening over here in the USA? The friend that I was referring to earlier on, who lives in Israel; cannot believe that this is happening to the people he knows here in the USA.  He even said that he sent me the information regarding the Coursera, because he “had a feeling they were lying”. He asked me “Do you have any guess why they are doing all of these things to hurt all of you?” The only answer that I could come up with is, “Money”. The reason that I stated above, regarding Medicare/Medicaid and the baby boomers. I was embarrassed to say that to my friend, but I still did. His response was “this is horrible”. He said that “in Israel you can get as much as you need; as long as it is opioids and not medical marijuana”.  It is totally opposite of that here in the USA.  In Israel, the primary care doc can prescribe what he believes will help the diagnosis of his patients. Imagine that! Oh wait, that is how it used to be here in the USA also! But not anymore!  I asked my friend if his primary  or pain Dr. helps him more? He told me “My primary helps me, of course! She helps the most.  She is nice, caring and gave me the pain medication with out any pain doctors advice.  On her own, because she is a DOCTOR herself…..you know? AS it should be”! Also, as I feel it should be in the United States once again.

Living Through Betrayal And Withdrawals


I’d gone to a pain Dr for 3-4 yrs s/p a MVA . I had multiple injuries/surgeries. They forced me to take opioids! I was afraid of them. Not for any reason; because I have no history of smoking or drinking or taking any kind of meds! I have a letter that the pain psychologist wrote, stating that I “don’t have an addictive personality.”…..so then I did all of the injections etc. & all of the PT-OT, Biofeedback etc. They wanted to give me an Intrathecal pain pump. Then we found that I am not a candidate due to Combined Immune deficiency disease. Soooo then the pain Dr “dumped” me off back to my GP for pain meds only! He said the the “Govt. looks at him through a microscope” so he wanted my GP to do the meds. So that was 2005 and in 2014-Dec., my GP had Feds at his office & he was removed from that office & sent to an urgent care! I was stuck because nobody wanted to prescribe the fentanyl losenges and patches for me (with Dilauded for emergency). I went back to my old pain Dr and he refused to see me! He said that “he didn’t want any part of that other Dr.’s (the GP) mess”! He wanted to send me to his “pain Dr. friend!” I researched the guy to find out that he was or is actually an addiction specialist. There was no way I was going there! I’ve never even smoked cigarettes! There’s no way I was allowing “that” to follow me around in my medical records. So I did it on my own! The partner GP offered to help me for a few months but asap I was told to find another pain Dr.. But I wasn’t just told that, I was badgered over & over again to go to that specialist. I lowered my doseages myself. When I finally found a kind pain Dr. who was respectful towards me; he told me that even though I’ve had a CVA and an MI, I was to “stop the Fentanyl losenges cold turkey!” I had gotten myself down to half of the amount of the patch. I stopped the losenges on my own, on the day that the new pain Dr. told me to. He told me that I never should’ve been on them in the first place. They’re for terminal cancer patients and even he’s not fond of them! He was visibly upset that I’d been on them for about 10 years! So I got down to half of the patch amount and to zero losenges! I was very very ill! The new pain Dr. told me that my body would be “fooled” because he gave me a smaller amount of opioids & I was still on half of the amount of the patch! Well, I’m here to tell you that my body was not fooled! Nothing was fooled and I was sweating, nauseated, had diarrhea and got very high fevers and blood pressures! I started researching withdrawals myself. Nobody was helping me, except my poor husband, who was feeling helpless. Nobody felt as alone and helpless as me during those dark days! I was so happy to have my loving husband to take me by the hands & walk with me through it all. It was a horrible 1st week; like the flu, but worse because the pain was so much higher. After about 6 weeks, things got better. But I must tell you that I never once craved the medication! I was happy to be rid of those losenges, actually. I’m very proud of myself for what I did all on my own, for the most part. I now have a wonderful pain Dr. Who cared enough about me to let me go and not treat me if I couldn’t do what needed to be done. I did it and I’ve done it and now I’m on about half as much medicine as I was on during those 10 years. I also feel like my pain Dr and I mutually respect each other. I did something by myself, that many or most people couldn’t do even with help!

I still take pain medications. I wanted to take them only once in awhile,, when in Agony; but my Legitimate chronic pain Physician told me that I have too many high pain chronic illnesses; that would be detrimental to my health. I live with pho of a stroke (CVA) and a heart attack. I live with lasting effects and pain from a TBI (3 yrs of brain injury rehab); along with full body/Systemic CRPS, Polyneuropathy In Collagen Vascular Disease (aka Ehlers Danlos Syndrome Type 4-Vascular), Rheumatoid Disease, Chiari with Chiari Migraines, Degenerative Disc Disease with multiple herniated & bulging discs, right Long thoracic Nerve Neuropathy, Lymphedema,Dysautonomia/POTS, Gastroparesis, S.I.B.O. (Chronic small intestine infection)…..

So I took my team of Drs advice and I take my medication as prescribed. They say that I have too many high chronic pain illnesses and that if I do not take it as I’m advised, I will be in intolerable pain. If one is “lucky” enough to only need pain medication once in awhile or for special occasions, that is great for you! I’m very happy for you. But as for me, I want to be the best wife, mother of 2, grandmother of 3, patient health advocate, US Pain Ambassador, Mentor, writer, Blogger and published author for the National Pain Report; that I can be! I don’t fear losing pain medications, I fear losing my life due to under-treated or un-treated pain.

So just remember that there are always people better off and worse off than you! Do not judge someone for the way they choose to live or the way they just get by day to day. There are reasons that may be unknown to you for why they need the various medications and dosages. It may be different for you; but please don’t judge because it might be different from your regimen. Different types of pain relief, from complimentary therapies, to Medical Marijuana to pain relieving medications; any of these may be exactly what various chronic pain patients need. They may need any of the above, or a combination of these to relieve varying degrees of torturous daily chronic pain.This is not a competition and there are no winners!

Days #3 And #4 *(And beginning of Day #5) -Withdrawals from Fentanyl Lollipop


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Hi Luvs,

Ten years I’ve been on those Fentanyl lollipops for Breakthrough pain. My GP, Dr. Peter Bullach, kept on telling me “TRUST ME’….”NO WORRIES, you’re out of that hospital bed and out doing a few things now”…..he’d say “Let me be the eye in the middle of your storm”….well that all went to HELL when he decided to get into some kind of trouble for writing too many prescriptions while the DEA decided they’d better check into him and they clearly did because now he’s working at an urgent care in Jackson, MI “Med Express” on NW ave. Except don’t go there if you want prescriptions because he’s unable to write them…yep..”THOSE” kind….not anymore…I’m so angry I could just spit. I’ve never hurt anyone, never will and never wanted to…I always just end up hurting myself….I just wish he hadn’t done this to me and now I’m just whining..

So it’s gone through now Day #4 and starting Day #5 and today I went to the Univ. of Toledo Medical Ctr. and saw the famous Dr. Blair Grubb and his Posse actually! I had my pacemaker checked and saw Dr Beverly but she felt badly but couldn’t do anything for me really?? She pretty much gave me a soft hug and sent me on my way and told me that I’d see the Dr next time in just a few months. Im upset because once again they have those new “patient online portals” and they have half of my information incorrect. UGGH What is wrong why cannot they get things straight?? I wonder how much was wrong when I didn’t even know about it?  It made me angry and I want it fixed because I don’t like my information, my medical info wrong. I wrote a note and told them to please fix it!!

Today has been the worst day ever so far. I cried probably 90% OF THE day. I writhed on the couch and couldn’t concentrate on even my Iphone or computer or anything. I finally slept some when I convinced Craig to call my new GP and ask for Clonadine after I  had read on a forum for people going through withdrawals from something online. It says if you can get it , it may help calm you down and help with pain. So I tried that also now and it did finally help me calm down to sleep on the couch awhile tonight. Also I did not take the Dilaudid because it just keeps making me sick to my stomach as if it’s going to explode along with my body which feels as though it is soooo much on fire that I’m surprised I haven’t spontaneously combusted yet!! UGhh…this isn’t going to be a long one because I can barely eek out this one at all. But I wanted people to know how I’m doing and it seems as though they want to know and are interested.

So today we went to Univ. of Toledo Med ctr. to see my Dysautonomia/POTS /Neuro-Cardiologist and they just saw me in my wheelchair with my blankets over me for pain and heat as I go between freezing cold and wanting to blow up from heat and feeling of being on fire!! So they couldnt do much….I had hoped that they would do more but they just didnt.

Therefore I spent the better part of the day there, in the car and at home on my couch crying and writhing in pain and feeling so out of touch as far as feeling like I want to stretch and yawn and sneeze all of the time and feeling jittery and then I have ativan for that but who’s going to help me get off of all of this crap later?  The Pain Dr. said the Fentanyl suckers were “DANGEROUS” but how much more dangerous can they be? I’m on the patch all of these years and so are many many people. Its Fentanyl and its all the same. I’m not a drug addict and my body may be dependent but I’m still not an addict. That’s not fair when I never asked for any of this and never even took an aspirin for a headache prior to all of this !!

I wonder if my Dr’s received their letters in the mail yet? Maybe tomorrow huh? I hope that it at least makes them think and not hurt anyone else…Although they are so arrogant it probably won’t matter at all to them. Especially Dr Dobritt, he probably won’t even read it himself. His little teeny bopper clerk will probably read it for him and protect him from “mean and bad me”!!! Well starting day #5 now and it’s not gotten better but only worse and I will be calling the pain Dr today.and I want to ask him if there’s any kind of shorter or quicker acting pain relief that I can have because the Dilauded is chewing up my stomach and I am having a terrible time of it. I thought by now I’d be writing to you how great I’m doing and so happy to be done and feeling so strong! But NOOOO…intsead I’m feeling whiny and miserable, crying and in writhing and in pain. Im so tired of diarrhea and stomach cramps and not being able to sleep and when I awaken in the morning and now not being able to take that sucker, I have to lay there for about an hour to 45 mins. before I can even get up or try to get up!! Itfe feels like I’m getting up on broken feet that have glass in  them and they’re broken in a hundred places…then it feels like my hands just hurt and want to explodell Getting up in the morning is the hardest of all and I dont like doing it without help and my husband wants to get up early to go get me a Dilauded so after 45 mins it can maybe work?? But they are not working for some reason for me…I took them for emergency pain help for severe pain afer a fall or a surgery and they seemed to help…they just are not made for me to take every 3 hours…I cannot….IM not…what am I going to do??? We called and got the Catapress or (Clonandine) to help calm me and help with the withdrawals and the pain…so remember that one folks…try to have Ativan or Xanax or something like that along with Imodium or whatever you can use for diarrhea and also get something to help with nausea like I did. Now I had to get TIGAN because it was the only one that didnt’ interact with either the pain patch nor the other stuff i’m on…but the Tigan has not worked for me at all. It did not help my diarrhea instead it made it worse. It also did nothing for my nausea….just saying…trying to help..

Gotta go try and get some sleep feeling really bad and gonna start to cry again…love,suzanne xo

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