Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!
Untreated or under treated Chronic pain can kill! There are many articles that discuss this topic but I’m writing from the chronic pain patients perspective. Most things that are written are authored by Dr’s and others in the medical profession. But for me and for us this is real! Sudden cardiac death is a frightening topic to discuss. This is true especially because many chronic pain patients live with the risk factors that are written about in the articles and medical journals etc. Personally, I have a pacemaker for not only Dysautonomia & POTS, but for an Arrythmia called “Sick Sinus Syndrome”! Additionally, I. live with Atrial fibrillation, MVP & TVP (mitral valve & tricuspid valve prolapse), CAD (coronary artery disease) & long QT syndrome! In 2005, I had a heart attack and in 2006, a CVA or stroke. Enough about me, but I’m trying to paint the picture that I am not alone in this. Many chronic pain patients have several comorbidity’s. If the CDC continues with this crazy “war on opioids”; taking our pain medications down to dangerously low & restricted levels, people will die! I may die as well, and I’m not being dramatic!
So many people, including our clueless government representatives do not realize that severe untreated chronic pain can lead to death. They think it is just an innocuous “pain in the behind” for those that live with it. It doesn’t interfere with their lives or the lives of the CDC, FDA and several others such as, Big Pharma and the many physician run drug treatment centers in the USA. But when suddenly, chronic pain “hits” one of their family members, then they start advocating more. But why do they have to wait until it happens to their family members or even themselves? Why can’t they listen to our cries of suffering now, before more of my friends die suddenly from the agony of living with the daily unrelenting chronic pain without any reprieve? Does the government or the general public even realize that Veterinarians get about five times more education hours than medical students get for human beings living with chronic pain? I read that there was a study done in 2011, and the Journal of Pain found that the United States medical programs only allot approximately 5 hours of teaching time on the management of chronic pain. Our Canadian neighbors give their medical students a whopping 19 1/2 hours! This is where the medical professionals who educate the incoming physicians are at fault for their part in this “crisis” as it has been called.
Just this past week, the pain community, including the support groups that I administrate online, lost another chronic pain warrior. I lost my 7th friend in just over 2 years! This is the 3rd friend that I have lost to chronic pain and patients diminished access to pain medications. In my experience, it continues to be the same story; in that the chronic pain patient tells their significant other or family members that they are feeling worse. They go to bed to try and relieve their pain and they never awaken. My friends husband found her slumped over in her chair, late at night when he checked on her. It’s not unusual for most pain patients to stay up very late watching T.V. or “playing” online to keep our minds off of the pain for awhile. When the coroners do an autopsy on a person who has died suddenly, and they find “drugs” in the bodily fluids; they blame the opioids. These are educated people, toxicologists an forensic medicine physicians. They seem to just blindly blame these deaths on the opioids instead of seeing the possibilities that exist. It could have been death from pain that was unrelenting and untreated and/or misdiagnosed and under treated. Maybe more of my friends died from the sudden drop in their pain medications?
What is it going to take to get the government to listen to our pleas? I’ve written and sent the same letter to the White House twice and have gotten no response. I’ve made videos on YouTube to explain this crisis in Chronic pain community. I was hoping for at least one of them to go viral. But instead, the viral videos are about usually someone falling off of a chair or a baby biting his brothers finger! How do we get them to listen to us? I agree with the fact that Opioids should not be the first option for people with chronic pain. I also agree with the research that’s being done on medications that cannot be crushed or melted to become more potent for those that do abuse them. But for those patients who have been on a “normal amount” and steady dosage of Opioids for a long period of time; why not leave them to the physician(s) that know them? Let the Doctors who’ve treated them for many years, take care of their patients without fear of Federal agents breaking into their clinic during hours and scaring everyone half to death! If someone has been taking opioids for a long time and the dosage remains the same and it’s working for them, can we not leave them alone? Let them live some semblance of a life outside of their bedroom or recliner. When I say “them”, I mean “us” and we are dependent but not addicted to these medications. These are not “powerful, strong meds that loop us out of our minds” as I’ve heard on several occasions. These are the medications that we need, in order to have a small amount of active time during the days. We aren’t asking for more and we agree to the submissiveness and feeling of personal character attacks with urine drug screening. We sign the contract with our pain management physicians. So why not just let us live our lives and stop attacking us and calling people who live with chronic pain, “drug addicts”.
Anyone who calls people living with daily struggles of unrelenting pain, “addicted”; needs to learn more and be educated about opioid use with chronic pain patients who have several high pain illnesses. Not only do they need to learn more, but they need to be empathetic and try to put themselves in the pain patients place for a moment or two. People, especially those in positions of power; need to think about what their lives would be like if they could barely get out of bed in the mornings. What if they couldn’t go to their fancy dinners or dances, due to chronic pain and and unrelenting fatigue? I’d say they wouldn’t like it very much and neither do we! How do we get these officials to learn the difference between the words “addiction” and “dependence” before more of my friends die from under treated pain or lack of any treatment?
I would like to respond to an article from May 23, 2017; written by Steve Ariens, Pharm D, or as we know him, “Pharmacist Steve”. I want to say “YES, Pharmacist Steve, WE ARE Quite Different”! This week I read an article entitled, “A Country of Drug Seekers” (National Pain Report, May 23, 2017). In the article, the author, A Pharmacist who is known as “Pharmacist Steve”, stated that “we should look at those who take/use opiates and controlled substances… and consider those that take them legally and those who take them illegally-because our society will not allow them to obtain them legally, and ask “Are they all that different?
He goes on to say that “both groups are suffering from depression, anxiety and physical and mental pain.” Also that “both are trying to “improve” their quality of life….just that their own opinion/definition of “improve” may be quite different.”
I will agree that everyone, or the majority of the public want to “improve” their quality of life. That’s a given, isn’t it? Whether you are a pain patient or an airline pilot, most people want to consistently improve the quality of how they live. I vehemently disagree with his assumption “are the two groups all that different”? Nothing is the same about these two groups of people. Persons with chronic illness do not obsessively think about and seek out something to make them “high”. A drug addict has a mental illness, along with an addictive personality; and does exactly that. I’m sure some chronic pain patients also have mental illness, along with some Dr’s, nurses, housewives and Scientists. I believe the number that research had noted was that less than 4% of chronic pain patients actually become “addicted” to their pain medications. In fact a very high profile Pain management physician, Dr. Forrest Tennant, M.D. Cited that percentage in an article at NPR, October 2015. I don’t agree that we “are all suffering from depression, anxiety, physical and mental pain”. The mental anguish that “we”, the pain patients, live with now days; is from the fact of not knowing if or when our treatments/medications will be withdrawn! I would say it is more similar to a patient on dialysis not knowing if or when their dialysis facility is going to close and there’s not another one for hundreds of miles! It may be similar to a Diabetic wondering if their insulin was going to be taken off the market completely? Then how would they live? What would they do? They would be in “mental anguish”. Without pain medications, (*that some of us have been on for many years, doing well, with little or no side effects); how will we be able to tolerate the unrelenting daily struggle with high chronic pain illnesses? Some of which are up to a #43 on the McGill pain scale? There are some people that are living with chronic pain and depression, but we are not all living with pain and mental illnesses. There should not be a stigma, by the way, to living with either or both of these issues.
I also strongly believe that chronic pain patients who sign a contract with their Pain Management physician, agree to take urine drug screening tests and take their medications exactly as prescribed for their legitimate diagnosis’: should not be in the same “category” as those who are “abusing” and “using” illegal substances to get “high”. We, the chronic pain patients are very different in that we don’t all have “addictive” personalities. In fact, at my pain clinic, I went to see a Pain Psychologist and that Dr. told me and actually put it in writing, that I “do NOT have an addictive personality”. I may not be the same as everyone else, but chronic pain patients are not the same as drug abusers who use Heroin and cocaine to get a “HIGH”. We don’t get “high” from our pain medications. I run several support groups for different chronic pain illnesses. I have spoken to many chronic pain patients and I can speak for the majority of those who have been taking opiates for several years. We do not “crave” our pain meds, nor do we think about them all of the time. We don’t sit around and wait for the next round of pain medications and obsessively ruminate about them. Mental “Pain” and mental “illness” are not one in the same either, according to anything that I’ve ever read or heard in my lifetime.
I have made numerous videos on my advocacy YouTube channel and I’ve written several articles on the subject of “pain patients being lumped together with drug addicts”. There is a difference between these two groups of people. Time and time again I am making memes for Social Media, writing on the subject or speaking about it. I’m really growing weary of having to defend my community of chronic pain patients against those in Washington and others with authority over us. When Pharmacist Steve stated that “some groups try to draw a line between themselves as being chronic pain patients and those who abuse opiates.” Well, of course we draw a line between drug seeking behavior, drug addiction and legitimate chronic pain patients who need their medications. Drug addicts live for their next dose or next “high”. While the chronic pain patient needs their next dose of pain relieving medication in order to live. We need pain meds so that we may have some semblance of a life outside of our bed or recliner. There is a “line” between us, it is like comparing “apples to oranges”. How many times do we, the community of legitimate chronic pain patients, have to fight for our dignity and our separateness from stigmas that are put upon us? If you want to “lump us together” with a group of people, why not “lump us together” with other medical conditions in which the patient is “dependent” on their medications? According to Dr. Tennant’s calculations, as a leading expert in pain management; 96% of chronic pain patients do not become addicted to their Opioid pain medications. Those of us who have been on a regular dose for many years and who are doing well, should be left alone! We are dependent just the same as a heart patient is dependent on arrhythmia or high blood pressure medications. The group of people that we have the most in common with are those who take medications for a chronic illness. The kind of medications in which their bodies are “dependent” upon in order to live some kind of “normal”. We, the chronic pain community just want to “live some kind of normal”. We are tired of being grouped or lumped together with illegal users and abusers of drug seekers. We must remember only two words. These words are “dependence” and “addiction”. They are as different as night and day, black and white and medication user verses drug abuser.
I run several support groups for various Chronic Pain illnesses. This was posted in a couple of my groups by Dr. Red Lawhern, PhD. He got a note from Dr. Forrest Tenant; who is a legitimate and well known pain specialist. An M.D., Dr. Tennant is a supporter for the appropriate use of opioids. Here’s a copy of the note from Dr. Tennant to patients, caregivers and advocates for people with chronic pain:
The following is by Dr Forrest Tennant, MD, who is board certified in both pain medicine and addiction medicine. I have his permission to pass it on to pain patients and their families.
HYPERALGESIA: NO REASON TO STOP OR REDUCE OPIOIDS
Forest Tennant M.D., Dr. P.H.
Please circulate to patients and families who need guidance on this subject.
One of the excuses that some health practitioners are using to stop opioids is to claim a patient has hyperalgesia (HA). This is a most dishonest, devious, and dangerous ploy.
First, the definition of hyperalgesia is simply that a stimulus such as hitting your thumb with a hammer is more painful than usual. Second, there is no way to measure or quantify the presence of HA in a chronic pain patient who takes opioids. Practitioners who claim that a chronic pain patient has HA usually do so because they don’t like the dosage that a patient must take to relieve pain or they have a bias against opioids. Some practitioners are actually telling patients that HA is harming them, and that their pain will improve or even go away if they stop opioids!! This dishonesty and deviousness may go further. Once off opioids, the practitioner may recommend that a patient have expensive, invasive or unneeded procedures. Danger may come with abrupt cessation of opioids in a severe chronic pain patient. There may be a combined or dual result of a severe pain flare along with severe opioid withdrawal symptoms. This combined effect may result in a stroke, heart attack, psychosis, or adrenal failure. Some patients may commit suicide.
All who read this need to know that many expert pain specialists either do not believe that HA even exists or that it is irrelevant to clinical practice. In other words, if a certain dosage of opioids is effective, continue treatment with opioids. There is no reason to stop or reduce opioids just based on HA.
Any time a patient is told they have HA and should stop or reduce opioids, they and their family or advocate should ask the following questions of the prescribing practitioner:
1. What test or evaluation did you do to determine that I have HA?
2. If I do have HA, what damage is it doing? (Show me some studies!!)
3. When did I get HA? (Nothing has change in some time!)
4. I’ve heard that HA may be the result of too much neuroinflammation or hormone deficiencies? Don’t I need to be tested for these?
5. If I stop or reduce opioids and still have some pain, what are my alternatives? (Will you return me to my original opioid dosage?)
The author’s personal recommendations are: (1) If your opioids don’t seem to be as effective as they once were, get a hormone panel blood test. I’ve seen many patients boost their opioid effect by replenishing pregnenolone, testosterone, estradiol, or another hormone that has diminished.; (2) If you wish to reduce or stop your opioids, reduce your dosage about 5% a month. By slowly tapering you may be able to greatly reduce or even stop opioids.
Please inform all parties that HA is not, per se, a reason to stop or reduce opioids. More important, if you reduce or stop opioids, what is your alternative, and, if the alternative doesn’t work, what will you do?
We are the pain community of the United States of America. How are we to know who to believe or what is the truth? Nothing feels transparent anymore, or has it ever been? I am writing this as a non partisan Chronic pain patient. I don’t know what to think anymore or who to believe. I remember President Obama standing right there inside of my Television set, telling me, looking me in the eyes and stating “If you like your Dr., you can keep your Dr.”! He told us that we could choose our physicians, hospitals and that things would not change much, but only get better. But then our premiums and co-pays tripled in amount. We went from a zero deductible on our health insurance plan to a $1200.00 per person in the family, per year! My husbands paycheck went down to what it had been 7 years ago and the paychecks continued getting smaller. Every test and everything that I have to get done, medically must be paid “up front” for the first $1200.00. Then they will pay maybe 80%? Our co-pays for medications went from $5 to $40 for each of my several medications and office visits went from $10 to $30 per visit. Living with too many high chronic pain illnesses to name, this is really hurting my family.
Don’t get upset with me yet, I’m not putting down anyone, nor am I supporting them. I’m just trying to get the facts out of my head and onto this page. I want others to know more about both, so they can possibly feel informed. We all know that if we read or turn on the TV, to become more knowledgeable about this, sometimes we cannot see the truth from an untruth. It all seems to depend on which channel you watch or what newspaper you read.
With Obamacare we were promised that health premiums would decline by $2,500 per family. But the average premium has gone up and the average family’s employer-sponsored health care plan now costs more than $18,000 a year. My husband and I have an employer-sponsored health care plan and it has tripled as I mentioned above. Last year in 2016, we saw an increase on the Obamacare policies and in 2017, at least in Michigan and for individuals; the premiums are supposed to go up almost 17%! The UAW is happy because in 2018, all of their employee provided health care was going to be counted as income and TAXED! It is called the “Cadillac TAX” and it was going to have the middle class working families fund subsidies for poor people. This is crazy! How can people live day to day when they are ill at all? Do they really just wish us “away”? Physicians are quitting in large numbers and pain Dr.’s are leaving in droves.
Now President Trump comes in and says that he is going to “fix things” for us. But I don’t know what to believe about this new healthcare bill. We won’t until we read the final Senate approved version. Below I have described for you a few of the changes that appear to be an improvement over Obamacare:
- This new Health care Act will eliminate the individual and employer based , “FINE”, or “PENALTY”; which is money that someone has to pay if they don’t wish to purchase Obamacare or have insurance at all.
- The new Health care Act would help decrease or take away the Obamacare taxes that have increased the premium costs, and limited options for patients and physicians.
- Everything that I have read about this new Health Care Act, states that persons with “PRE-EXISTING CONDITIONS” are guaranteed coverage. It also bans health insurance companies from raising premiums for people with pre-existing conditions also. The catch is this: You must maintain insurance coverage or sign up for new insurance within 63 days of leaving your current plan. I also read that they are putting 8 billion dollars in a special fund for states to help people with pre-existing conditions. That is so all of the healthy people don’t have to pay for us unhealthy people.
- This plan is allowing parents to keep their young adult children or dependents covered until they are 26 years old. This is a part of Obamacare that I’m pretty sure everyone likes.
- This plan is supposed to help Americans access affordable quality health care by giving us a tax credit. I read that this credit would be between $2,000 and $14,000 per year for low and middle income families and individuals who DON’T RECEIVE insurance through an employer or a government program
There is a “Public Health Service Act” in legislation that is requiring members of congress to also partake in this American Health Care Act. So they are saying that there will be “no exemptions” and everyone will be getting the same plan(s). This means that the government employees will have to have the same coverage as the people.
It is very regrettable that so much misinformation is being spread about this bill. I especially feared for the “pre-existing conditions” part of this Health care Act. All I heard from everyone was that these were going to be excluded and people like me, with many health challenges; would not be covered. But from all that I’ve researched and read for myself, this is the truth: Under no circumstances can people be denied coverage due to a pre-existing condition! The laws that we have now will still be in place and can only be changed if a state chooses to take care of us in another way. No state can take away our coverage based on a “Pre-existing condition”, regardless if they get a “waiver” or not. From what I’ve read, nobody can be priced based on their health status as long as they’ve maintained continuous coverage of their health insurance.
On November 8th, 2016, by the rules of our American constitution and by the votes of the American people, Change happened! Whether we like it or we don’t, it is happening right now. One thing we don’t want is for the government to take over our health care. We need to be allowed choices and to have the freedom to choose our health care.
To reiterate some things that I’ve stated, I understand that members of Congress will have to have the same AHCA as the people of the USA with no exemptions. I also now know that people with pre-existing conditions will not be charged higher premiums, nor will they be excluded from health care coverage. There are special funds for states who choose to opt out of certain programs, it appears. But still they are saying that nobody with pre-existing conditions will be hurt in this plan. There is something called the “MacArthur amendment”. This amendment allows the insurance companies to charge higher premiums for a person with a health condition ONLY IF THEY DO NOT MAINTAIN CONTINUOUS COVERAGE. It also only applies to the “individual insurance market”, which really only applies to 7% of the country. So you see, this does NOT apply to 93% of the persons with employer-provided coverage or government coverage, such as: Medicare, Medicaid, Tricare, VA benefits and others. One last piece of information is that the higher premiums included in that 7%, can only be charge for ONE YEAR and only to people who did not maintain continuous coverage. Lastly, the 8 billion dollars for the special state programs will be ON TOP OF $130 billion. This will be available to states through the American Health care plans’ patient and state stability fund. The states can use these funds to help lower the out of pocket costs, like premiums and deductibles. They may use the money also to help maintain preventative services (annual health check ups), dental and vision care.
Lastly, regarding the AHCA, there will be a refundable tax credit to persons without other health care options so they can get covered and stay that way BEFORE something medically catastrophic happens to them. All of these ideas stated in this post seem to prove to me that people with pre-existing conditions will be covered. But we really won’t know anything until the final version of the AHCA is passed. We can only pray that both parties will try harder to work together and stop so much “HATE” for the other side, whichever side that may be. The Government needs to work together for something that will be a combination of what the Democrats want and need to work for their constituants and what the Republicans want and need for theirs as well. We all are ONE COUNTRY and it is turning ugly. I don’t like it one bit. I don’t want to be for or against anyone or anything until I know the whole truth. I don’t want anyone to be hurt. I certainly don’t want anyone that I love or me, to lose health coverage. Mostly everyone I love has a pre-existing condition! So let’s just wait a bit, until we have all of the facts. I’m not for or against either party, I’m just trying to get some information out there for all of the people.