Enough is Enough

Enough is Enough

By Arianne Grande.

At this very moment there are millions of Americans who are being denied life saving medicine. People with severe health issues are facing a LIFETIME of pain due to a devastating diagnosis of some incurable disease, or because they were tragically injured and all treatment options have failed. I am one of those Americans.

I was involved in a tree cutting accident in 2010 and sustained a cervical spine injury as well as having a chronic illness that causes daily pain. I was able to achieve a good level of functionality while being treated with opioid medicines to mediate my pain. I was able to garden, walk, and to travel to see my children and grandchildren. I was able to take care of farm and household chores with more ease, and even sit and watch a movie comfortably with my loved ones from time to time. Now, my life and my health are spiraling out of control after being without medicines to effectively mediate my chronic pain for almost 5 years.

Few realize that patients in pain are now being profiled, discriminated against, put into government databases where even their Veterinarians have access to their medical records. They are being forced into ‘pain contracts’, or ‘medication agreements’, with the direct threat of not receiving needed medications if they do not comply. These contracts are in fact, more penalizing than some probation sentences levied at individuals who have actually committed drug crimes. People convicted of drug crimes can often earn their freedom with probation and by ‘proving’ themselves in a court of law. Pain patients have no such right.

Seriously ill, injured, and elderly patients are being subjected to endless, repeated drug testing protocols, pill counts, and are only able to use 1 pharmacy to fill all their prescriptions. These patients are sometimes even told they must begin taking medications in order to be prescribed the medicines that treat their pain effectively, resulting in dangerous situations where polypharmacy can pose serious health risks and even the risk of death. Patients with complex health conditions are being told they must undergo risky medical procedures in order to keep receiving the pain medicines that are already working for them, and are often treated by medical professionals with hostility, dismissive attitudes, and blatant contempt. Many more are merely being abandoned by the medical community without a second thought now, as they are being determined to be too much of a liability by health practitioners.

It’s important to note that even when a patient complies fully with their ‘contract’, and follows all the rules as stipulated, they are being force tapered or denied needed medication altogether. Most who were functional and living their lives the best they could, are now housebound and forced to endure severe, relentless, debilitating pain.

People with serious, often debilitating health conditions are even being told that instead of needed medication they should learn ‘pain acceptance’ or to use exercise, yoga, and/or meditation to treat their pain.

People already suffering horribly with life-long chronic illness and/or injuries are now describing their lives in the same way that people describe the experience of torture. Human Rights watch has even taken notice and is investigating. This cannot continue. Opioids are safe and effective when taken responsibly, which tens of millions of people do.

Unrelenting chronic pain impacts every aspect of life. It also leads to other serious health issues such as sudden cardiac arrest, stroke, hypertensive crisis, endocrine dysregulation, PTSD, anxiety, and even cancer. The public health crisis that is unfolding due to withholding and restricting pain medicines will make the ‘opioid crisis’ pale in comparison to what is coming if we don’t alter our current trajectory and approach to the addiction issues we face as a nation.

Since implementation of PROP ‘guidelines’, the current approach to combating the ‘opioid crisis’ has not turned the tide on the steady rise in overdose deaths for those facing issues with substance use disorder, this is according to recent government statistics tracking OD deaths.

If we truly begin to look at addiction objectively, without stigma, and with some measure of sanity, we see that addiction isn’t about the substance per se used for escapism. The causes of addiction are far more insidious and complex than a substance or habit, and will require of our leaders the impetus to address the underlying causes of addiction; issues like joblessness, homelessness, poverty, and lack of access to affordable health and mental health services.

Another often neglected fact being overlooked by the current public opioid narrative is that addiction happens in a very small percentage of people who are prescribed opioids for legitimate health conditions that cause moderate to severe pain. Some professionals have suggested that number is about 2.5 or less in those with no prior history of substance abuse.

Chronic and intractable pain patients MUST BE EXEMPT from policies and legislation regarding prescribed opiate based medicines. Those with serious illnesses and injuries should be able to be covered by a palliative care umbrella and allowed access to the medicines and treatments tailored to their specific needs, which will allow them to achieve the best quality of life possible.

We in the pain community are begging for mercy. We are pleading with our legislators and our doctors to do what is right. We are fighting for our very lives.

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Jul

Thanks for an excellent discussion. I’m in agreement with Cynthia. There is a REASON this illegal torture and misinformation began and continues DOING HARM to persons who need OPIATE ANALGESICS to moderate and manage PAIN ISSUES.
I just watched a woman on MSNBC put out incorrect statistics, placing blame on pharma and over prescribing, to promote her newly released book. The book is called Dopesick
What I heard made my blood boil.
This incorrect account of ‘opiate’ abuse continues to be perpetuated, on main stream media.
If I knew where, who or how to do anything more than I already have, I would. CPP’S, we need a spokesperson for the cause. The lies have got to end before this horror ends us all.
Sorry but I’m just so angry and desperate I can’t get the message out.

Melissa H

Thank you Arianne for your eloquent article. I was searching the internet for any new info that might help me in my fight with Fibromyalgia. It has now been 8 days since my Pain Specialist (in AZ) cut me off from my pain medication for ‘inconsistent’ results on my last drug screen. I had been taking 2 extra Tylenol every time I took my ocycodone because they would not prescribe me anything stronger and my daily average pain was about an 8. That being said, I still managed to drag myself out of bed and get ready, take my daughter to school and get to work. I pay my bills and try to be a productive member of society. So…HOW DARE THEY infringe upon my rights to try to LIVE a productive life! After reading through about 15 of the comments…with tears in my eyes, I realize there are SO MANY of us out there…fighting against the same wall. Those of us with chronic pain or whatever injury was suffered and were then prescribed pain medication to help us achieve a better quality of life, would GLADLY stop taking our opioids, if we were offered something better. We DON’T WANT to ruin our liver or stomach linings, but we also don’t want to suffer in agonizing pain every single day. So, we opt for the lesser of two evils and do what we can. For the government to interfere and put such unrealistic regulations against those of us that NEED the help is inhumane. Who will help us fight? Who will step up against the ‘Man’ and give voice to those of us suffering? I’d gladly right a 100 letters to each and every senator out there…if I thought it would help. What we need are others in a position of power outside of the normal politics, to help our cause. I WILL NOT go quietly into the night. Hopefully there are others of us that feel the same.

WA State Suffer

I watch the 700 Club and I noticed that people in the top part of the government listen to them, now with that being said, can we all ask the tv show to show what the war on opioids has done to us, leaving most of us undertreated and some to suicide. Many of us are Christians and we pray to God and ask for relief from this terrible pain, we need the Christian Community to know the other side of this insanity. I have wrote to my local tv shows and newspaper but nobody wants to get involved. I feel that God is leading us to unite with our Christian brothers and sisters and have the 700 Club do a story about us and as I said in the beginning, that I know people in our government watch this show and also Pat Robinson has a lot of influence. Maybe the National Pain Report could contact them to. I for one would sign a contract releasing my personal journey through this nightmare. Please let me know what you all think? I for one am getting desperate, my pain is destroying my life.

Susan

Plenty of places around the globe have cpps suffering. Canada has long had their own kettle of fish, Australia, the EU….

Pain does not discriminate among ages. All people in pain deserve to be made as functional as possible and their pain managed appropriately, individually and at pain acceptable levels.

Among the most neglected of all cpps have been our elderly population, those in long term care facilities and certainly our Vets. Many of our Vets are returning with horrific injuries, lasting physical traumas which in the the 1990’s they would have unlikely survived. Consider the V.A.’s very own restricted guidelines re pain treatment for any Vet.

Jimmy Nails

It’s all about Liability!
Ever wondered why the whole opiates are bad thing was swallowed eagerly by educated docs, pharmacies, systems of medical care, medical insurance companies ?
It’s about avoiding the liability of accidental prescription overdoses, the few who start on scripts then move on to street drugs. Even cities are now suing pharmaceutical companies.
Oh what a relief it must be to no longer experience a lawsuit related to ones professional activity.

Jody

I give up on any government help. They think a 1 size fits all Back and KNEE Brace is a Good thing. I don’t Trust the Government anymore. I can SEE WHY PEOPLE ARE TAKING THERE LIVES. I DON’T WANT TO BE IN THIS PAIN ANYMORE. YOUR BRACES ARE NOT FOR EACH AND EVERY PATIENT. WE DON’T ALL HAVE THE EXACT SAME CONDITION.
BAD IDEA.

Jody

ONE SIZE FITS ALL BACK AND KNEE BRACES. NOT A GOOD IDEA. EACH PATIENT DOES NOT HAVE SAME CONDITION. MY SPINE IS A BACKWARD S. I ALSO WAS DIAGNOSED W FYBROMIALGIA ALL OVER MY BODY. THIS WAS FROM MULTIPLE CAR ACCIDENTS FROM OTHER DRIVERS. I WOULD LIKE TO SEE A MEDICAL DR. JUST SEE FOR 1 DAY WHAT FYBRO PATIENTS REALLY FEEL LIKE AND GO THROUGH ON A NORMAL DAY. THIS STUFF IS BAD. YOU NEED TO WEED OUT THE BAD APPLES AND HELP OUT CHRONIC PAIN PATIENTS. OR TRADE US PLACES FOR A DAY. MAYBE THEN YOU WILL BELIEVE US.

JJ Storm

It is NOT just America.
Canadians are suffering because America’s war on drugs nonsense propaganda spreads, just know my ridiculous PM followed your guidelines word by word.
FIX THIS AMERICA.
We don’t have the luxury to switch family doctors or see specialists within a few weeks we wait YEARS MONTHS.
And try to focus on the young pain patients I’m sick of the “I’ve been on these meds for years therefore I deserve them.” Mentality.
No.
The young are really suffering here and it wasn’t us that’s was over prescribed to.

Dinora

Hello, I am diagnosed and getting disability for fibromyalgia, living in the city of New York I was able to get what I needed for pain, I moved to New York State and been cut off from getting any pain meds. I came here to live a quiet life that has turned into a nightmare. I been to the emergency room once when I was having the worst flare and the medical doctor there labeled me “user” and did not take me seriously what so ever. Is so despicable how I continue to be treated. I had enough!! Your article is so close to home ! Thanks for writing this.

Terry

Btw, I see my chronic pain psychologist for my 5th appointment this week. I will write about the results. So far the technique is quite intriguing. I used the technique on my last visit and my pain was gone 100%!!! It lasted about an hour. Hopefully through repeating the technique over and over in her office, it will be something that I can do when I’m alone and it will last longer and longer. I’m really trying hard to be open minded. I see some real value in what she offers, maybe there’s a chronic pain psychologist near you, ask your chronic pain doctor for a referral. To be continued………..

Terry

Arrianne that was beautifully stated as everyone has said. I am 100% with you but let’s be realistic about it, we’re dealing with the government on this issue and what we all want, need, is for them to say they were wrong, that’s never gonna happen. Go ask your neighbors and coworkers what they think of the opioid epidemic? You will soon find out that the general public has been poisoned by the government through the media, people love to repeat what they hear on TV as fact. And why would they take the time to dig up the real statistics? Why would they? What if there was a medication that was created strictly for a certain kind of, let’s say, heart disease? And then let’s say some person, without that heart disease, takes it, out of curiosity, and gets a terrific high from it. Next let’s say it becomes the new ecstasy or even better the new opiod for drug addicts, without heart disease. Do you think the government would put limits on how many mgs the heart patient could safely take, or take them them away altogether, take doctor’s license, ruin his practice? Or do you think they might just give the heart patient a different medication that’s not quite as effective? These are hard questions and the only ones asking them are us, the chronic pain community. How many people are actually subscribed to this forum? I’m telling you we are swimming up stream on this. My sister’s a nurse, super smart, works in a doctor’s office. No matter what statistics I rattle off to her, no matter how much proof I give her, she starts telling me the stats that she KNOWS to be true, which they are not. She didn’t go online and research the topic, even though me, her brother, also fairly intelligent, am telling her where I got the stats, what percentage of overdoses are from legitimate chronic pain patients with legitimate prescriptions and what drugs most of the people overdosed on were, which happens to be heroin and fentanyl, separately or together. All she knows is, it was on the news and they can’t say it if it isn’t true. She also told me that once I FINALLY get off of these awful drugs that I will more than likely feel a whole lot better. They cut my meds in half over 2 mos. and I’m here to tell you, I DON’T feel better. I’m not trying to be a wet blanket, I’m trying to let you know exactly what you’re up against. Start excepting your new life with unbarable chronic pain and find alternatives for your pain. God bless you all.

Jacqueline Alexander

I have been in Chronic Pain for at least 17 years. I have been diagnosis with Multiple Sclerosis for 21 years now, I have been in the worst pain in my life. I didn’t choose M.S. it chose me, I am not lazy it’s just the pain is so overwhelming. I have been getting my grandson for the summer for 6 years every Summer. However this summer we haven’t been out to the park or to Sinnissppi park , because I can’t walk for my pain in my legs, back and my whole body. I really can’t believe how many Doctor’s have left us patients in the worst shape, I thought that the Doctor’s had a Oaths to Not to do Harm. Clearly no one is doing that , it’s like every one is out for themselves . Its a Damn shame but I need changes Not for just myself but for all of the patients whom needs help too. Thank you.
. Jacqueline Alexander.

Allison

THIS WHOLE OPIOID CRISIS IS SO WAY OUT OF HAND. YES ENOUGH IS ENOUGH. THAT’S WHY.. SEPT 1ST.. ALL PAIN PATIENTS…. FLOOD THE WHITE HOUSE FAX MACHINE WITH LETTERS OF TESTIMONIES. FLOOD WITH LETTERS AND SHOUT THIS GENOCIDE FROM THE HOUSE TOP. SHARING OUR PAIN IS NOT DOING ANY GOOD. WE HAVE TO ” PROTEST ” TAKE SIGN’S TO THE CDC, DEA. AND SIT ON THEIR STEPS. OUR VOICE HAS TO BE LOUD AND CONSISTENT. PAIN PATIENTS.. WE HAVE TO RISE UP.. SOON !!

Gretchen

Love this article thank you too the author but I have another theory about why this is happening to us I am permanently disabled and a pain managed person I began my journey in the MD area and my husband retired and am now seeing it in Ohio I’m all for the suggestion too protest if you are able too in DC let me know if someone gets a plan together I’ll be there was going too down some Ohio politicens in the next election in DC anyhow one in particular named Kasich of Ohio for his discriminating he is GOP and going too run in the next election for President don’t be fooled by him he will be no kinder then Trump my theory is deep a large tax bill was signed by the GOP I think you already know about it it is a big tax break for the richest and corporate some have been fooled by it helping the middle class that’s what they want you too think but it will have too be payed back by hard working middle class income earners in 10 years if they cut our lives short and take our medications this will go a long way too pay for this tax cut not too mention the extra Medicaid and Medicare recipients that won’t be here too get it I think this is about money the more they eliminate the less they will owe and can keep too pay the tax cuts for corporate back or just pocket more in the future for the rich and greedy I also think when that is done what group of people will be their next target too eliminate we all need too care disabled pain managed or not The more they eliminate the more they save the more they can steel and finagling their agenda I know some Drs are flowing with them to take away opiated pain meds in return for bonuses from our government WHEN THEY FINISH WITH US WHO WILL IT BE NEXT???????????????????? God bless all !!

Ellen

My god I live in WA state who is that doctor yelling and talking to a patient like that no one should be subjected to that please give his name and clinic. I and no one in this state want to ever encounter him and the medical board needs yank his license that is abuse on a vulnerable adult if not
Comfortable
Naming him on this site please call adult protective services and tell anonymously so he is investigated
I am so sorry that happened to you

Ellen

Well written
This withholding of opiates to patients with severe pain that is not treatable or sad but they won’t even get relief through death is equal to a hate crime and medical professionals and law makers denying access to comfort and better function with the type and dose opiates needed should loose their medical license and even DEA and CDC should be charged with human torture with the hate crime statute attached and if forced loss medicine or taper or denial proper medical care commit
Suicide then murder should be the charge with hate crime attachment
Please human rights lawyers help us in this and it should be all places not state by state

Jasmin

I am 62 years young. I am single, no children, no husband. I am a chronic pain patient. Have a lot of lower back issues. My meds are basically my answer to my prayers to relieve pain and live a somewhat normal life. Since getting my meds lowered, I have been in an awful state. Please let the doctors handle their patients and everyone like CDC and FDA should worry about more of drugs being sold illegally and people overdosing from that. Or people who have no business taking these medications if nit prescribed for them. Let us live again!!!!!! You are killing us one by one and don’t even care. This is so insane!

Christy Roy

ABSOLUTELY AND BEAUTIFULLY -ARTICULATED LETTER!!!!! Well-said and thank you, above all and far beyond words, for saying what millions of us aren’t able to and being such a strong voice for the chronic pain community!!!

drew p

I am terrified. I am one of those people who can’t stop taking pain medication because my pain stems from brain surgery on my Thalamus. My pain switch is permanently turned on and there is nothing that can be done about it. I will be on pain medication until I die. I know that I can not live without pain medication because the damage to my brain is too severe. It is unbelievably cruel to give a sick person some hope and a taste of a normal life, only to snatch that away for political gain. We need to monitor our elected officials carefully and get the word out about our anti-opioid zealots who threaten our lives.Speak to journalists and tell them your story to put a face on the damage that this false crusade has caused. Don’t go quietly

Kim

Everything you mentioned is what I’ve been through! Now my ‘pain specialist’, lol…is telling me that after looking at my x-rays(1) that I am structurally sound and not showing any reason for being in pain, huh??? I’ve had FMS/CFS for over 12 years and the pain can be debilitating if not on pain meds. This month will be my last script. The only thing I won’t miss is the Dr’s condescending attitude. Thanks for the article that says it all. Once again the government tries to fix something by using a huge paintbrush.

We are in South Africa and our son Jed suffered from CRPS he was unable to move and lay in bed for about 3 months in unbearable pain…he was 10…we searched to find him treatment anywhere in the world…and learnt that one of the only hospitals able to help him get his life back was exactly 15 minutes away from us in Cape Town…he was admitted for an infusion…his pain on day 3 was 0…it was a miracle…he is now pain free and so are the other children treated in this hospital.
BUT…the medication used or the disease is not recognised….so we went for months without anyone able to tell us what he was suffering from…we were lucky to be able to do the research ourselves as to who could help…
We have realised that most kids in the world are not helped with these complex pain diseases and are now cripple or unable to find help as the disease spreads to full body pain…
This is totally unacceptable so we started the jeditedi.net foundation to create awareness that these kids must get help as they can be treated and regain their lives…
We need to make a noise for them…they do not deserve to suffer like they do…and be misdiagnosed and not treated…or even not believed….
At Jedi Tedi we send Tedis to all these children around the world so they know they are not alone….they have a voice…and we need to make it a loud voice…
Regards…Jedi Tedi for CRPS AWARENESS

Bonnie Vandercook

Excellent!! So well stated, there is nothing to add.

kelly

Thank you for writing this. I myself have my own plight. I am MAD at how I have been treated since the so called Opioid Crisis has just snowballed out of proportion. I have contacted the Maryland State Governor several times regarding these new inhumane laws that have been inflicted upon me. I keep seeing these photo opts where the Maryland state Governor is stating how he has traveled all over our state addressing this crisis, but I have yet to get one word from his office after several emails to him. The media keeps reporting on the Hollywood and the Music industry overdoses which does not help the ordinary citizen that has pain issues and needs to use pain medications to control. Those reports just makes the drugs we use look more dangerous than they are due to the high profile of a person that has drug abuse issues. Please everyone don’t let our government make you suffer in pain without an email, letter, or phone call to make yourself heard. Do not give up, do not suffer in silence, and do not go away. It is frustrating, disheartening, trying, stressful, and sad, but we have the right to live a quality of life.

Notasheep

Bigpot each generic is formulated differently, with different inert ingredients. It absolutely makes a difference in absorption of the morphine. I have had to change pharmacies and the generic from them does not work, period. FDA does not test a generic, just the name brand drug. New pharmacy won’t even ask supplier for a different brand!

Wow Arianne ! Profoundly stated piece that needs to be read by all. Especially David Muir on ABC World News. Maybe someone will tell the whole story about the other side of the “opioid crisis”. Since most of us aren’t in shape to march for our rights, we need sit ins and maybe road blocks like the Black Lives Matter movement. Patients lives matter. Or if your running the country they don’t seem to matter at all anymore.

WA State Suffer

After a car accident back in 2001, I developed Central Pain Syndrome which affects both of my legs with horrible stabbing, burning, throbbing, freezer burn feelings, electrical shocks and aching chronic pain. I found that my pain medications and anti anxiety medications are the only things that ease my pain. Then as most of you know we who are on a pain contract, I had to give up our anti anxiety medication or loose my pain medications.
So after seeing my nurse practitioner last month and being lowered again I asked her how are you going to help my ever increasing pain, she said that I am going to see their new pain doctor. So I go to see him but first I had to sit on those hard plastic chairs for over an hour, with me, walking, standing, sitting with my legs hanging down causes more pain. As I am sitting there in his exam room, my legs go in spasms causing them to act like I have popcorn popping in them. He turns and yells at me saying why are you doing that, just stop it, I tell him that when I was sitting out in his waiting room for over an hour that’s what they do, he says well I saw your latest X-ray and there is hardly anything wrong with you so why the dramatics? At that point I start to cry with frustration, he says knock it off, people like you make me sick with being on pain medications for 17 years, don’t you know that it doesn’t work for you when you have been on it for that many years. I say as calmly as possible, doctor they are the only thing that works for me and I have tried every pill, therapy, counseling, tapping, bio feedback, chiropractic care, PT care, acupuncture, virtual reality, injections, mindful thinking, pain classes, herbs and the list goes on. He yells at me saying that he is going to take me off of them all together and I said how is that going to help my chronic pain? He said that I will feel better not being on them, I was very upset and said do you think I like coming to you and other doctors literally begging to have some relief from this horrible pain, if I thought for one minute that pain medications weren’t working, I would never ever put myself through this hell of being treated like drug addict and a pill seeker but that is not the case and if you read what Central Pain Syndrome is, then you would know that it doesn’t show up in X-rays. At that point he walked out saying people like you make me sick and find your way out. I am scared out of my mind, I can’t live with this pain.

Alan Edwards

Your article needs to be read by every politician, physician, pharmacist, policeman and nurse. You hit every major point which obliterates PROP, and the idiocy of pain clinics torturing patients mercilessly and I have firsthand experience. Most healthcare providers are brainwashed.
I am in such severe pain, that premature death is possible. I am defenseless, voiceless, and can barely crawl now. I search for a pain free chair or stand but that has failed for years. The painkillers, effective, safe, and inexpensive, were stopped and my brief intractable pain hiatus went back to the unbearable 50 year pain birthed in childhood.
Many have already died from pain and the diseases which are causal. It’s past time things change. Sessions, the heads of the FDA and alphabet soup agencies should repent or be fired! I cannot believe Trump would allow chronic, intractable pain patients to be subjected to the nth degree of pain if he knew we were targeted by whomever. I have reached a new level of suffering and I hope no one reading is at my pain intensity. God cannot be pleased with the elderly or anyone else being denied pain treatment. Their has to be an umbrella put in place now or the CDC voluntary guidelines need to be ignored and thrown out immediately!

Cynthia Knutson

I think you are a great writer & I couldn’t have worded it better myself. God is obviously speaking through your words we can only pray that you are being heard and people are realizing (I pray) that they have made a BIG mistake and an abuse of power thinking they know ANYTHING about chronic pain & seem to take joy in lumping us together with the drug addicts. Anyone with half a brain can see we are being FALSELY accused without any evidence whatsoever we are already guilty of diversion selling etc. whatever.I have 15 yrs of crystal urine tests, never needed pill counts, etc, they allowed me to use cannabis back then because they believed it helped me which it did it dropped my jaws so I could eat. I’ve several medical issues & fly out of one & into the other etc. I have so much pain and just go through hell waiting to take my next dose of pain meds. My pain management Dr is the best and always hugs me we are like best friends and I hate going in each month and seeing the sad look in his eyes that he feels he can no longer adequately help his patients even the ones he’s had forever like me he trusts me he knows my pain issues and why I’m on pain medication! I was on methadone (4 10 mg tabs every 6 hours back then and it worked and I had a life.) now they have me on two 10 mg tabs every 8 hours and I can have up to two 10 mg Norco for “breakthrough” pain!
I was like you have got to be kidding Norco? And I might have to have surgery now because I seem to have a blockage in my urostomy (drains urine through illeal conduit.google for more info) and I’m scared my pain won’t be treated adequately! WHY should anyone have to worry about that?! This is insanity people.. wish it on the horrible people writing these”laws” they need to know what REAL pain is I think they just think we have “backaches or headaches” I know most of us have proof of chronic pain health issues. Sometimes I pray God would just take me home ya know what we are people that worked and maybe we got hurt but we NEVER asked for chronic pain/health problems@@!!!!!SMH.
Good thing I still have my medicinal cannabis card. I think many people don’t know there are pain relieving effects with cannabis.I’m here to say there are.Geez alcohol is more dangerous than opioid meds! I killed my stomach with NSAIDS now I cannot take them if I do I get bad ulcers.Praying for all chronic pain pts.
God Bless.

Dooney

Im pretty much done. Ive lost everything, job, social life, finances. Ive gained PTSD , severe depression, anxiety, self loathing, and more pain due to a reduction . I pray every night for God to take me. I cant do another year, 5 or 10. After 17 years of botched surgeries, mistreatment, judgement, I cant get up. I used to be so strong, working with drains in my abdomen after a surgery. It all haunts me now . I have no insurance and owe tons of bills. But those docs who ruined my life are probably living fabulous lives. And now the government is dictating my pain control. If i decide to end it i will be sure to send letters beforehand telling them they have blood on their hands.

Kerry Heffner

Arianne you so eloquently said what we are all feeling. I’ve tried the letters to senators. I get the pat answer “I will keep your thoughts in mind”. I am not a vengeful person but sometimes I wish some of these law makers end up in our shoes one day. The stress this has caused me has added another prescription to my bundle of already prescribed meds. All this alternative treatments they’re wanting us to try have already been tried by most of us..For myself I can’t take ansaids and insurance will not cover all these other methods ie. message, acupuncture, physical therapy which has a cap on how many visits. How do we get our rights back? I don’t see a light at the end of the tunnel and I am not a pessimistic type person.

Tami

It has gotten so horrible for Chronic and Intractable Pain Pts in my state, my Psychiatrist has been super concerned about my “DEA profile” for over a year. I didn’t understand what that meant until after speaking with my PM doc. I’ve a condition known as Complex PTSD. It requires anti-anxiety medications for treatment. I also fight Rheumatoid Arthritis which produces anxiety in one’s body.
My PM doc’s Clinic has taken the stance of no opioid pain medication and benzodiazepines are allowed to be given at the same time. If I take a .5 mg Ativan in addition to my pain medication, I risk being fired by the Clinic thereby ending the ability to receive rx for pain medication. I’ve been safely taking both as needed for over 10 years. It was NEVER a daily occurrence. When PRN is indicated on my medication label, I do just THAT…AS NEEDED. I’ve always taken any medication as directed by my physician and according to the instructions on the label.
I am 10 days post op a total hip replacement. While in the hospital I received an anti-anxiety medication along with the pain medication. I remember crying because I thought it would no longer be possible for me to see my PM physician!! Now, THAT is ridiculous!!
This opioid hysteria has nothing to do with law abiding citizens who are responsible when given pain medications and instructions on how to use them. It is ALL about people who got a feeling of euphoria, usually beginning with alcohol, and progressed to illicit, illegal drugs coming in from countries other than our own.
Unfortunately, I understand both sides of the hysteria. My son is an addict/alcoholic fighting every moment of every day to stay clean and sober. I don’t understand this disease he battles. I’ve NEVER experienced the euphoric feeling, ever.
Finally, politicians and their sarcastic rhetoric across the aisles are of help to none of us! Let our physicians be our physicians. And please help those who suffer from substance use disorder to live a life clean and sober. Please don’t allow Chronic/Intractable Pain Patients to be the COLLATERAL DAMAGE of politics as usual.

People are dying needlessly. I have wondered if our pain medicines are being changed and weaken, trying to make us think its only mental with us and by weakening the narcotic or changing it, that we wont know the difference. By us dying this way. They dont care. I think they want us to. they went from overdosing and dying to taking away from us and we’re dying. They think one way is better than another. I was fired as a patient from my doctor. He did this after I got a pain management doctor. Im not sure but I think he must have gotten checked out by the DEA and he was told he would need to take a week of training in order to give a narcotic of any kind. I think he blames me and others who needed the opides for pain. he fired me by letter. I think because of the DEA they went into my records and just saw the list of using pain meds. and over years different doctors..if they ever really checked. They would know why I changed. some I didnt care for, one doctor retired because of his age then he passed away, Another had a really bad stroke and he retired. The DEA gets in there and makes me look like a doctor jumper and a drug seeker. Makes me feel so embarrassed. Why are my records any of their business. They want to harass the weak and sick folks and take away from us…We got to do something to stop this.

Well said, and thank you for taking the time and energy to write this. Unfortunately, the ears and eyes that need to see it are not here at NPR. We are the choir and we already know all this. Somehow, this very true message has to get through , ASAP, to our state and federal governments, how do we accomplish this? We’ve alredy been writing letters, profusely, for years now. And calling and showing up at hearings, it’s not working, where are the doctors? Why aren’t they protesting what they are being forced to do? Why do they just go along with these draconian edicts? They need to get organized and speak out. Unfortunately, we’ve reached a point in this country where human lives are disposable. The population , especially of sick and/or old people, is larger than the govt wants to deal with. And it’s only going to get worse, is my guess, unless doctors or politicians start caring.

Dragonfly

I guess we will all have move to Mexico. Plenty of narcs there

Dragonfly

I have ehlers danlos syndrome type 3. I was told I would be in pain the rest of my life. Last June, the pain police just cold Turkey took my pain meds after 10 years. I have done accupunture, physical therapy, chiropractor, swimming, walking. I dont sleep, I cant eat. I been on every anti depressant in the book. I want my pain meds back. My quality of life sucks. SHAME ON WHOEVER STARTED THIS FREAKING TABOO. PEOPLE ARE KILLING THEMSELCES CAUSE THEY CANT TAKE THE PAIN. I EVEN BROKE DOWN AND BOUGHT A QUELL. ALL THAT IS IS A DISTRACTION. IF U THINK MIND CONTOL IS GONNA STOP PAIN U R THE FREAKIN JOKE. HOW DARE U TREAT US THIS WAY. [edit]

Oregon is about to ban ALL opioids for ALL pain conditions, no exceptions (for low income patients, at least for, now, which adds class discrimination onto medical abuse). PLEASE folks, submit your stories & how opioids have enabled you to live a halfway decent life to the committee –you don’t have to be an Oregonian. Email to: herc.info@state.or.us

There’s a so-called hearing on August 9th, they claim they’ll make their “final decision”* on October 4th. Many of us believe that if Oregon succeeds in establishing this outrageous policy, other states will then compete to see who can be “toughest on the opioid epidemic,” so you’re not necessarily safe if you’re in another state.

I’m not convinced they can be diverted from this insane, extremist course, but we’ve got to try.

*is it just me or does that have a certain familiarity?

Sandy

Excellent!!! Enough is enough!!!

To answer a lot of persons questions on who started this Opioid epidemic, it was parents of druggie kids who complained, met with Senators, Governors and President. Complained that their son/daughters had been addicted to one drug that led to another and killed them. So 95% of them hadn’t been prescribed opioid medication rather they obtained all forms of drugs illegally off the streets, stole from someone etc. Tragic yes, but there’s not much for a parent to do if their kids refused help. They enjoyed being high on whatever for what ever reasons they had. So this is absolutely what started this Opioid epidemic which really is “Illegal Drug Epidemic”.

These parents keep whining and crying that it was the “Opioids” that killed their kids when in fact these parents need to suck it up, get with reality that it wasn’t the “OPIOIDS, but illegal street drugs. (My sister killed herself by enjoying the HIGH that came from shooting up.) Hey my family and friends realized that it was her choice, we couldn’t stop her from using. Unfortunate yes, YET you don’t see my family members whining, crying, feeling helpless and guilty that they needed to make themselves feel better by addressing it was Opioids that killed her. NO, it was heroin, meth and whatever else she enjoyed. These illegal drugs should never have been put in the same category as legal medical Opioids that were written as a script by a licensed Doctors.
There’s a huge, huge difference. None of which anyone in the government agencies can actually see, or understand because it’s been shoved down their throats that any Opioids are exactly equal to street drugs. Nothing can be further from the truth.
There’s nothing more than I’d like for everyone of those fighting the government opioid epidemic to experience the extreme chronic pain we all live with on a daily basis. They need to experience it before they should be allowed to change any policy. My pain clinic closed, can’t find a pain clinic to go to that will continue to fill my pain medications without them insisting I have more procedures done that hadn’t worked in the past yet made more pain. Also their 2-6 hours away, require to get meds filled at their pharmacy only, doctors charge $25 per script written as well, which means more money out of pocket for them doing their job and twice the amount of travel time plus expenses, copy of your will, DNR, Living will before first consultation. It’s [edit].

E. Susanne Wilson

I couldn’t have said it better!
Some pain patients, it happened to me when my Anesthesiologist/pain MD moved to Florida. I. Wound up seeing a Quack. His PA Lorded over patients with a Bullwhip, then started to pick on me, subjecting me to unfair & insane practices.
I had to put my beautiful 43 acre Ranch I built 25 yrs. ago for sale, no longer able to care for it since Major Back Surgery, 2002, being passenger in vehicle hit by drunk driver & 2008 3 Cervical spinal fusions, others’ carelessness.
Moved Florida East side of Old & Loved Pain Dr., again too far & Restrictions now won’t allow. Back & neck now ripped up Neck Fusions & Back Op, even more pain, worry, hospital not giving Opiods, but 2 drugs, 1 caused Diarreah & 1, Sent me into Coma!! Had to sit in parking Lot 8 hrs. In heat, knocked out. Opiods don’t send me on “trip” knocked out!! Xtra opiates from yrs. runnning out, taking only when pain cripples. Criminal treatment so far, Offices hang up!!!
I have always been treated with Respect,now know Lowlife hatred. This
Government Insanity MUST STOP. I can’t help others’ careless acts caused THIS!
Deaths from Suicides by those like me will be blamed on addiction. I only take a pill to make Chronic Pain Go Away!! We are Victims of Torture at hands of U.S. Gov’t.. No where to Turn, caused by Criminals &
addictions of the Weak!!! WE ARE THE STRONG ONES, living productive lives. YES, STOP THIS INSANITY!! WHERE DO OUR MILLIONS TURN FOR RELIEF?????
So Well Said by Others Below. Trump brought this up, Maybe we should Garner his Attention to Our Cause. At least he can admit Error and Expertly Champion a Cause!!! I cannot do this alone, I need all of US to be Heard!! HAs anyone done up a P
etition online, so worded as to Draw Presidential Support?? Please contact Me!!

Diana

“They are being forced into ‘pain contracts’, or ‘medication agreements’;”

Sorry – I have never had a problem with the contracts. There are in place to make sure the “drug seekers” cannot use several pharmacies to sell extra drugs or to use far too much. They count my pills and yes, I have to pee in a cup to show them I am taking this drug and NOT selling it.

My pain clinic is always looking for new ways to help – if they SUGGEST things like yoga or tai chi, I will try it. They never suggest it INSTEAD of my pain meds.

I am so appreciative of the pain clinics. They have a real struggle to separate the chronic pain patients from the ‘drug seekers’ and are always in jeopardy of losing their licenses if they get it wrong. So yes, the contracts, the urine testing, the using only one pharmacy… I for one am happy to comply. God bless these folks.

Clara King

I found a u tube channel of dr marvin faulkner that is at least discussing some of the confusing topics & how we can unite

Nonya

This is one of the best responses I have read regarding pain and Pain management! I too am an intractable pain patient and I could not agree more. Heroin and bathtub fentanyl are not what we need or want, yet we get lumped into the same group of street drug users for no other reason than the legitimate medicine that we do need to have some semblance of a normal Life is sometimes abused.. absolutely ridiculous!

PJoned

Thank you for writing this. I concur with everything you said and plead with our government, doctors and specialists, the media and community. Stop penalizing the suffering and treat us with the care and respect we so desperately require and deserve.

Kisha

I weaned incorrectly off of valium to keep my pain management Dr happy. When psychiatrist and I figured out what was causing my worse than ever symptoms, we set up a small re-wean schedule. He wrote it out and explained. At my pain management appt. I sat in tears waiting. Finally when she came in, before she brought up my records I explained everything through my tears and told her I was terrified. Her reply, “Well, we need to wean you off this too.” No empathy, no understanding, no talking. Just forcibly wean. Even as I ask for another stupid injection in my back. As far as I know, she won’t be putting me back on pain med, as she said “maybe you should talk to your dr to see if its best to wean off it” After she knew I was weaning. Her demeanor and attitude, during my most raw and vulnerable moment completely broke the trust I had in her. I still need the other non opioid meds, I have to be treated, I have to keep going to her, despite her breaking me. We all know how it will look if I start looking for another Dr. Just an “addict” looking for a Dr. who will prescribe. I’m stuck. I’m broke. I’m lost.

Terry Shapiro

This person is RIGHT! I have followed the estimated death count due to over dose. The government is or adding street drug O.D. to this number. I am all for alternative medicine. AS LONG AS IT WORKS. DOCTORS PUSH THIS AND IF IT DOES NOT WORK MANY OF US CAN’T AFFORD IT. INSURANCE COMPANIES HAVE THIS ADMINISTRATION IN THEIR POCKET. ALTHOUGH I AM VERY CONSERVATIVE I AM CONVINCED THIS PRESIDENT IS NOT OUR MAN!!!!!! PEOPLE THIS ALL STEMS FROM HIS BROTHER BEING AN ALCOHOLIC. And we’re being punished for it. Thank God I have an excellent doctor that tapered me back. Now off and my life is actually better. But could get worse at any time THEN WHAT!!!!! It’s ridiculous that we are treated like second class citizens. UNTIL WE ALL JOIN TOGETHER AND ACTUALLY MAKE A SHOWING IN WASHINGTON NOTHING WILL CHANGE!!!!!!!! SOMETHING NEEDS TO BE COORDINATED TO DO THIS SOON. I know some are to sick to go. But a representative needs to be there for them. COME ON PEOPLE LET’S QUIT BITCHING ON THIS WED SITE. AND BOMBARD OUR CONGRESSMEN AND SENATORS. THEN SET A DATE TO SHOW UP. IT’S TIME FOR SOME REAL ACTION.

Granny

Since we all have a lot of timme on our hands, and it directly affects all of us, make time to read the actual CDC guidelines. From the background on processs and ‘expert’ involvement, to the 5 key questiions, and the ‘quality’ of data used to reach the recommendations (some of hich the experts wre seriosly divided on), you willl see that this whole nightmare is built onn a flaky house of cards. Clearly, the ppl making decisions that are ruining our lives care nothing for the scientific method or the reality of pain management vs addiction treatment. “First, do no harm…” seems grossly disregarded. People with no understanding of oour day to day reality are making life and death decisions for us.

Jo Anne W

Excellent article. What can we do?

Teri Hentschel

I was taken off pain meds about 5 years ago. I went to pain management they wanted to put me on methadone! No thank you! Since then I cannot get even 10 pills to help with the really bad days. MybP C is part of hospital group and has to follow their mandating.

Sandy M

Arianne, you stated the facts so very well. As the result of a hemorrhagic stroke, I have a rare condition that causes absolutely horrific pain, and along with a deformed back that included Scoliosis surgery, with scars to prove it, and other pain conditions, am now bedridden.
I have been with this same physician for 30 years and she knows me well. However, I too am being put thru signed contracts and tests (I’m assuming because of our government playing doctors).

I agree with a person on here who wrote that their prescriptions had been cut and they no longer felt they were getting the same affect as before the cuts from our governmental officials and they are the same opioid. I didn’t get a lot of pain relief before the government stepped in, but an hour or two of some relief helped me be able to get a few things done and not feel the way I am now, in bed! I think these pills have something in them or lack thereof my other pills didn’t. I don’t feel the same. I have tried to contact my officials to no avail.

Something has to be done, but I honestly don’t know what. I’m unable to get out or go anywhere and cannot write as eloquently as others can. I cannot believe our country has come to this!

The reports have thrown us who are in so much pain into those who are getting high and obviously feeling good and no shortage of drugs. We need our medications to help us work and be part of the human race. This is not right. I’m so SICK AND TIRED of all the DRUG REPORTS, I can’t watch them anymore.

Heidi

You have hit the nail on the head. It is imperative that patients/ advocates/ caregivers speak with their legislators at all levels from city to federal. There is no understanding of real chronic pain issues by these people. We can only keep voicing our needs and expectations of relief from pain. We are a much larger group than even we think we are, and if we combine our voices we will be heard! Keep talking about this to those people who can actually do something. Find out what ‘commission’ or ‘department’ in your state makes the rules for prescribing and let’s inundate them with our stories.

Susan

Excellent article. I’ll be taking a copy with me when I meet my Congressman and my Senator, Rep. Dave Brat and Tim Kaine respectively, Virginia.

I’m so tired of hearing and reading all sales pitches for yoga, “mindfulness,” accupuncture, hypnosis, PT, TENS, nerve blocks, steroid injections, push for SC stim, US treatments, surgery, antiinflammatories, CBT, mental health counseling I could scream. Yada, yada, yada. If any of these modalities had alleviated my pain adequately I would have continued. (There was a REASON I sought pain eval art a multidisciplinary pain center from the get go.. Really!)

A vast majority of mental health pros automatically “assume” ( dead wrong too) all Cpps must require counseling, couldn’t possibly have THAT much pain..CP’s must be depressed. Must be addicts. Must have some other SUD or OUD pts, whatever. They your their rehab and drug treatment centers..All cpp’s are construed by mental health pros as multiple substance abusers, alcoholics, other opiates, illicits, benzos…..

Just treat the pain for cpp’s whose horrid diseases and pain from horrid accidents left them suffering…but. their lives regained, they were functional again once the pain experts were consulted. Letting responsible, accountable cpp’s suffer, allowing post op pts to suffer and literally dying cancer pts to suffer is an unforgivable disgrace and atrocity. The head in the sand approach is STILL not working. Cpp’s and their highly capable pain practitioners need not be punished. Stop the insanity!!! Use your time to go after the illicits and addicts who caused the PAIN CRISIS for all legitimate and responsible cpp’s who deserve and require their appropriate pain mgt. to be restor85Atxed to ” pre politically driven hype and hysteria the fall out of which has been thwarted towards innocent, long standing, compliant, opiate maintained cpps!