The War on Opioids – A First Person Account

The War on Opioids – A First Person Account

As a life-long learner, I read constantly. I read everything I get my hands on.

As a disabled woman who wants to learn everything there is to know about my conditions, I read some pretty weird stuff sometimes. I get up in arms about the possibility of Medicare being cut because that’s my only insurance.

As a chronic pain patient, I began to worry in 2017. I worried that those of us in the chronic pain community were about to lose our pain medication.

Denise Hedley

I really hate being right about that one.

At the time, part of me said “it’s not going to happen” while the other part of me, the realist didn’t agree. The realist was right again.

I don’t think anyone could fathom just how bad it could possibly become though. I decided to take matters into my own hands.

I had been responsibly taking opioids for my fibromyalgia, lupus, osteoarthritis pain since 2009 when I fell down a flight of stairs. Responsibly means having never sold my pills, failed a UA, run out of pills before my refill date, and did everything that my doctors recommended. In response to a Medicaid edict, I even went off of them for 6 months when Medicaid refused to cover. This was leading up to my coverage being under Medicare.

I suffered that six months, but that was in 2015. I knew I was getting them back, I suffered through, and was very happy when that time was over with.

Nonetheless, in 2017, I was struck with an ominous foreboding of the opioid crisis. I decided to take matters into my own hands instead of losing my prescription on someone else’s terms.

This decision happened to coincide with my actually being informed that my doctor would no longer be prescribing. We were all being unceremoniously given one last month of meds and cut loose. The doctor informed me that he would help me find a new pain management practice because he honestly believed that I should be medicated.

Of course, I did not foresee how the next several months were going to pan out. I had no idea that I would be traveling to say good bye to my beloved father. I had no idea that my marriage was going to blow up forcing me to run like hell. I certainly didn’t foresee the 6 weeks I would be flat on my back with the shingles. I didn’t make finding new pain management a priority.

I did my research. I made my calculations. I figured out how far I needed to wean down to make my quitting Percocet easier on me. I did, however, expect withdrawal to be horrifying. I told exactly two people what I was up to. I didn’t want anyone worrying about me. I just wanted to come out the other side of it.

The time came when I took the last pill. Part of me was terrified of what was to come. Another part of me wondered just what my pain would be like unmasked. It had been pretty horrifying before I started pain management. I hoped that I would be better prepared.

I went through withdrawals for exactly two days.

After eight years. Two Days. And it was no worse than a minor case of the flu.

When the withdrawals were over, I realized something else too. My pain was worse than I remembered it being.

It was awful. The stuff that nightmares are made of. Still, I was determined to at least take a short break. For some reason, I also didn’t think it would be an issue getting them back. Surely people would not be so inhumane to say “no” to a chronic pain patient, right?

Turns out there are a lot of inhumane people out there. Too many doctors that practice without compassion and it reminds me why I much prefer the company of my cat, Sebastian.

I had heard that the opioids would make my pain worse when I first came off of them. Then it would get better.

BULLSH#T.

I want my meds back, but now I’m a prisoner of the war on opioids. Doctors are running scared. Nobody in my new hometown wants to write me a prescription.

With fibromyalgia and related conditions, the pain threshold is relatively low. That means that we feel pain from things that don’t cause pain to the general population. For example, blood pressure cuffs are a nightmare for us.

Our pain threshold might be low but our pain tolerance is extremely high. You see, we can actually function for longer periods of time at pain levels that would make a mere mortal feel like they were dying.

Dying. Yet that is how our pain feels every single day. I personally function at an 8/10 on the pain scale. Childbirth is considered to only be a 7/10. I function better when I can mask it though, but masking it requires Percocet. But that option is being taken away from us.

It feels like the war on opioids has become a war on chronic pain patients. We are nothing more than collateral damage.

We are starting to get louder though, can you hear us yet?

Denise Hedley was initially diagnosed with Fibromyalgia in 2009. Her condition has worsened, and a diagnosis of bilateral RSD came January of 2019. She also suffers from Osteoarthritis, 2 herniated discs, and Systemic Lupus Erythematosis. She is still waiting for referral to new pain management, and continues to suffer without pain medication.

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Authored by: Denise Hedley

Denise Hedley was first diagnosed with fibromyalgia in 2009. Her condition has worsened, and was diagnosed with bilateral RSD in January, 2019. She also suffers from Osteoarthritis, 2 herniated discs, and Systemic Lupus Erythematosis.

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Loyal P Kuhn MsD

I am a 69 YO Permanently Disabled Service Connected veteran with chronic lumbar and cervical pain. I use hydrocodone to be functional – not pain free, but functional. The “War On Opioids” should be a war on illicit drugs (Street Heroin and Fentanyl). I have used my hydrocodone as 96 +% of opioid prescribed patients do – responsibly, with care, and respect. Laying in bed with crippling pain is not an option. I will be functional or I see no reason to continue a tortured existence. As you have stated, the younger doctors have no training – neither in the efficacy of opioids, nor in compassion, and certainly not in empathy. Should we institute an addition to their training where they are subjected to agonizing pain for an extended period in order that they understand the repercussions of being dysfunctional with pain? Without that degree of ability to step into the patient’s shoes, we might as well be tended by emotionless robots. Is the next step to be euthanasia for chronic pain patients in an effort to stop opioid use?

Glen

I do wonder if people are really paying attention here. WAKE UP! The constitution is supposed to protect your rights.The decision to chose opioids for pain should.be YOUR right as much as drinking alcohol. Everyone every day should write the President and ask him to quit passing laws that only benefit smugglers and black market. If he wants to bomb Iran fine. But attack defenseless Citizens???? Isn’t chronic pain enough? I wrote yesterday. Even if a Veteran is hooked, a living addict is still better than a drug free dead person! What is the rush to pass laws? Didn’t work with prohibition and won’t work with drug laws. How many Japanese shipping containers are loaded with baby dolls made out of opioids? Good grief, there are countless ways to hide drugs. You cannot stop it. If drugs were legal stupid people would all overdose. Addicts would not have to rob you for drug money. Everyone knows that junkies have to sell in order to support their own habit. Pushers use drugs to control bookers. Anytime a lot of money is involved there will be guns. We cannot get rid of guns, greed or prostitutes by making it illegal. You hurt innocent people trying to do the impossible. O

Lora

Laws are for PUNISHMENT not PREVENTION. Now that we have established that fact how does any drug law help prevent addiction or those whom are already addicts? IT CANT, why? Because addicts are criminals and criminals do NOT follow the law. So whom does the war on any drugs affect? The answer is quite simple as law abiding chronic pain patients. And their approach the war on Narcotics is not only imhumane to chronic pain patients but a breach of oath at best and constitutionally treasonous. Everyone questions how drugs should be administered but NO ONE questioned whether it was a violation of this countries law abiding citizens constituional rights. And honestly those rights not only apply to Narcotics but all drugs whether they are hypothetically illegal or not. Now for a moment consider that you hate the idea of those illegal drugs becoming légal but ask yourself these 2 questions, are they being illegal shopping addicts from doing them? Of its légal would you consider now smoking crack or doing héroin? Im willing to bet you answered no to both those questions. So why do these laws exist? If they are not for our saftey or benefit then how could they be constitutional? Spoons dont make people fat, cars dont cause wrecks, guns dont shoot people, knives dont stab people these are all just adjectives which are things, just like all drugs illegally illegal or legal. Drugs dont kill people. I am perfectly content with only creating laws that protect one from another and more than content ending laws to protect one from one self.

Tired Of Pain

This is a tragedy ….I had a brain tumor and …mild to Severe osterioarthritis…PTSD over A Violent Crime…Fibromyalgia…Chronic Fatigue…Ebstien Barr…and Debilitating Migraines…
I was with my dr for 12 years and never asked for pain meds …I Dont like them…
until The Migraines came for days on end ….Of course I always had a fast metabolism prior to the migraines….I told my dr to find the problem and fix it my stomach had ulcers from the meds. .I was diagnosed then with the brain tumor on my brain stem…That they believe I was born with….They werent comfortable with doing surgery due to the fact …It could have paralyzed me ..or cause death…yrs went by and I had to go from Narco…to percocet….
I had moved to Fla and at The time many Drs were Arrested for over prescribing….and I went to 3 pain management drs who were Afraid to prescribe meds to me…for fear they would go to jail….one of those dr said to me I cant prescribe to you….You look perfectly Healthy..theres nothing wrong with you….
I had been looking for some relief…I was hurting so badly .
..I called my mother and told her that …I was afraid I would have to find meds the illegal way …
as A Christian it was against My beliefs and I struggled with the thought of it (Intense pain chronic) Id not experienced Before without relief…it got worse with every day and No one would help ….I thought I can take no more…and my mind turned to Ending the pain Myself. For Good..as a Christian I Prayed God would forgive me…but I didnt want to risk Hell….or
My RN Mother told me to Go to a Methadone Clinic …And say what ever I needed to to get in…It was a no hassel way to recieve medical help and counseling …I was relieved….
now im disablled and had Medicare ….it cost me 1 dollar for the script of Methadone from my other dr…
At the Methadone Clinic I had to Pay 400.00 per month….had to move in with my daughter…and give up all privacy …..

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Meg Taylor

We, as responsible pain patients, pay the price for the overdoses, illegal sale of opiates, heroin use, fentenyl overdoses and smuggling from Mexico by the drug addicts who abuse the drug that keeps pain patients able to function in this world. I think allowing the addicts to overdose might not be a terrible idea.

C. B.

I’m very sorry for your situation. I’ve seen firsthand so many patients, like you, decide that they were going to go off of their pain meds because they were so terrified of losing them by force, and of course many more who lost them by force; and invariably, they find out that their pain is so torturous that they indeed cannot live that way. It’s the reason they went on pain medication in the first place, of course; no one just goes straight to opioids, and no one is getting narcotic pain medication without going through all the hoops first. They tried everything else, all the physical therapy, all the NSAIDs, all the procedures, and they did not help. They did not help, and their pain was severe enough to warrant long term opioid therapy; and they took their medication as prescribed, they submitted to urine tests whenever asked, they never asked for early refills, they did any tests they were asked to, they were good and honest patients. All of this framework existed before this current mass hysteria took hold. Prescription rates had already been falling since prior to 2014. It’s been proven again and again now that prescription medication and pain patients WERE NEVER PART OF THE “OPIOID CRISIS”. Never. Part. Of. It. NEVER PART OF IT!! Yet, this manufactured genocide continues, and that’s because it was never about the “opioid crisis” in the first place. No sir, this unconscionable abuse has been purely orchestrated to increase profits of those who have holdings in Suboxone and in for-profit rehab centers, principly those behind the baseless propaganda machine that is PROP and Andrew “Heroin Pills” Kolodny. Their plan was to lay the kindling of mass hysteria using fabricated data about addiction, and then fan the flames with media propaganda until the fire became big enough that the smoke would obfuscate what it is they were really doing: forcing patients off of effective and largely harmless opioid regimens, onto suboxone, ineffective for pain, for their profit.

Gail

The war on opioids has been a crucifixtion of patients who require therapeutic levels of said MEDICATION!!! I have been on opioids for many years as there is no other drug that would allow me to function at all!
I would hope by now the government and CDC would understand they need to go after the pushers and Cartels! What will they do to the patients next!!! Instead of being angry that patients being treated by doctors who want the best for their patients, work on the illegal distribution of drugs and the garbage the Cartels are spreading!!!
This opioid witch-hunt has harmed the people you say you are protecting! And this is shades of the 1930’s prohibition and we all know how that ended!!!
If this project had been thought through we would have had a successful alternative to opioids that would allow patients to function. We would NOT villianize patients and doctors. and we would NOT be handing out Narcans to repeat offenders!!! One f…up should be the limit. But again this has NOT been thought out!!! I have a list of things that should have been done before having a war we cannot win!!!
I’m sure some of you have medical licenses, but most likely no flesh and blood patients!
PLEASE reconsider what you have done and stop punishing patients who are NOT your
problem!!!

I understand you completely. I too have tried on my own to get off all my pain meds etc and it was hell because I not only was going through withdrawals but also was suffering my normal everyday fibromyalgia and Chronic Fatigue pain. Within a week I was crying in pain and I knew I could not live this way. I had no life and only time I didn’t have pain was when I could sleep but as soon as I woke up it was back. I get so angry because this war on prescription drugs is only punishing those of us that need them to have any kind of life.
I did have really great pain management Drs in NC and TX. I also spent some time with s friend in Oregon and I went to the dispensary there and after a few trial we found the right combination of CBD OIL AND THC and it was amazing. It took away my pain and the anxiety of knowing you will be in pain daily. But of course it’s not legal in most states. Just burns me up that I can’t take something that is a plant that has grown since beginning of time. They say we have freedom in the US but do we really !!???!!

I hear you loud and clear Denise! What I can’t understand,-“ whry have Drs. who prescribe pain meds to good established pain patients, fearful of these CDC guidelines? After all, they are GUIDELINES. So, for some unknown reason, the pain Specialist is running scared. I understand these were meant for Primary care physicians. This “ force tapering” is occurring Nationwide . It became LAW.
I feel that The CDC guidelines should be abolished, and each State should form either small groups and have Town meetings to get a handle on patients being undertreated for our pain, and the worse part-we are paying money to be undertreated. Maybe a task force in each State could have a group to help substance abuse. But, we Pain patients have NEVER had a say at all!
Also, I was a successful pain patient X27 years-, and a former RN. I think that I am a good example of having my bloodwork normal, kidney and liver function tests are good. I lock up my meds-and never sell them .what I find disturbing-my present PM Dr. can’t show me concrete evidence of a pain patient overdosing!
That is because he can’t ! There is no such thing. But, beware-many good pain patients who have been abandoned by their Doctor, have nowhere to go. We have good people committing suicide. Is that acceptable?” So, why can’t Pain Drs. Look at the long term est. pain patient, and say “ well these meds must be working.. she is still here.” However, like all other pain pts, force tapered-I do not have a good quality of life. I am bedridden, walk w/ a cane. If I don’t keep moving, there is a chance I will die an early death! I want my life back. Too much mis-information from the Public, as well as our Politicians- need to stay out of the Dr. Patient relationship. Bring back care to our Veterans, and pain sufferers!
We also need a National TV ad aired. There is confusion of addiction-which is totally different from pain management. Sincerely, Kathleen Clark, RN ( Retired).

Angie

Thank you for sharing…..so many of us are in same boat….i NEVER thought it would go this far either!
Its the MOST INHUMANE thing…that our gov. s done to us!….god bless!!!…i pray you get help…

Moira Ann Messinger

I knew when Chatter was heard the population effected was going to be the elderly n the disabeled all suffering from valid pain etc..

Maureen M.

Dear Denise, Thank you. That was very well written! and I liked reading about your journey…I could relate to some of it. How you are making it without your meds is beyond me. I send you strength.
I suffer from Chronic spine injury related pain, also a regular 8/10 (4 failed spine surgeries) and last year I was diagnosed with Systemic Lupus also, of which I am now learning a whole lot more about my pain issues through my own research. I cannot imagine being without the meds that I am thankful that I still receive. Although, each visit with my pain doc I hold my breath till I leave with my Rx.
The average person has no idea the strength it takes for us all to live in pain, and to be stigmatized etc. Keep strong warrior and I hope you get new Pain Management ASAP!

Jane Gill

Hi to all of us labeled as addicts,and mental cases and if we would only take medicine for when we overdose ( R Y Kidding Me?),plus Advil( Sorry about the ulcers!), go to a shrink ( to talk about what our parents did to make our human body Feel Pain) and lastly of course physical therapy ( oh well forget that one b/c most of us can’t do PT without medicine! I wanted you to know I just left 4 tweets on @andrewkolodny( No Bad Language!) I think this “ doctor” is on such a peer trip nothing any of us say phases his group. However, I am going to continue to let him know my feelings. One being that b/c of him “ First Do No Harm “ has been thrown out of doctors certifications! I am so ANGRY! Just the other day at a pharmacy they told a well dressed man very loudly that “ if you need Valium and Percocet you are an addict and we can not take part in your addiction!” It was only his THIRD script and everyone heard the pharmacist! I walked out to ask the man if he was okay he had Tears in his eyes and told me he had a rod put in his spin! But now the pharmacist feel and Dr.Kolodny feel if he would only take Advil and see a shrink he would be doing great ! I pray for all of you and your families Everyday!

CSA

Our voices must get louder and louder to combat the menacing cruelty of doctors and politicians who inhumanely believe it is okay to make us suffer, and who will lie, cheat and misinform people as they pursue their selfish, evil agenda. Having worked in the past with the DEA, I am also aware that the prescription opioids, hoax, which is not the problem according to the actual data, is being fueled by self-righteous, entitlled government employees who do not want to lose their jobs as the use of marijuana increasingly becomes legal and who are using opioids as a convenient replacement to continue their war on drugs To the point of absurdity. We must in spite of the pain and suffering continue to unite and fight the people who are causing great harm to us.

There has to be more that we can do to raise awareness and gain some highly placed advocates.

Frattini Mark A

After having to stop all my pain medication cold turkey even though my neurologist said it should be a 50 week tapering off. I was given one last month dose of my fentanyl patch, morphine and Tramadol . Another doctor recommended Kratom for the withdrawals and pain. It works amazingly. I use 1/2 teaspoon which equals 1 gram and it’s amazing. No withdrawals, no pain and no high. It’s pretty inexpensive but tastes like [edit]. But I’m no longer tied to our legal drug pushers, Physicians who know nothing about pain or chronic pain.
The Kratom has saved my life and my life is so much better then it was when I was loaded on opiates for Sensory Neuropathy. I wish Kratom worked for all pain patients. Because if all 50 million pain sufferers stopped using inadequate opiate doses and stopped going to pathetic physician and used Kratom things would change because we would close this poor system by closing down poor doctors and hospitals along with crooked drug companies. But then they will list Kratom as a schedule 1 drug ending that form of help. As they do for medical marijuana still being classified as a scheduled 1 drug. We should start class action suits against the American Medical Association, along with the CDC and big Pharma for example. We are 50 million strong. Let’s hit them all in the only area they care about, money!

Susan Beamer

Denise my heart goes out to you. I was fortunate to find a decent pain management clinic. I had the choice of two . Luckily I chose the clinic that was legit and tje doctor didn’t get arrested. I will pray for you to find a great pain management practice with compassionate providers.

Notasheep

Thank you for telling us your story.

Robert Gripp

tell it girl! I have piped in several times now on this site. We need a high profile “poster child” to help us be heard and understood. I have asked everyone to be on the watch for someone they think fills the bill. Some universally well liked and well-known person who has chronic pain that can help us carry the torch.

We also need a leader to coalesce around and reap the benefit of our numbers. This may or may not be the same person. As I have mentioned before our numbers are staggering as a voting block. Reliable statistics reveal as many as 200 million Americans suffer from chronic pain. That number represents almost 40% of the entire population! If we could only focus and harness that power we can change whatever we want! Just keep thinking along these lines and if you think of someone who might help do your best to reach out and also share your ideas with everyone.

Whatever you do don’t forget to vote.

Noleta Braddy

What a wonderful article! I just found out 2 days ago that my insurance is refusing to pay for my pain meds. I get one a day! I have DDD, 2 bulging disks, one herniated on my L5. I have a cyst on my brain that causes horrible headaches. All the surgeons I have seen say surgery is not an option yet! My L5 vertebrate is only viable in the middle, I have to lift 50 lb boxes at my job. Praying I don’t fracture it. My pm doc is saying they have to take me off my pain meds soon because I got diagnosed with fibromyalgia, the new guidlines tell doctors that pain meds make it worse. It’s all crap, they will figure anyway to take them from us. I will continue to fight it, and I am praying daily for all of us that suffer. May God keep you and bless us all!

Billy Malone

An opioid epidemic is a gift to everyone; the drug companies make more money buy selling higher cost replacement drugs, the politician uses it as a campaign strategy “look at me and what I am doing to protect everyone” and let us not forget the huge amount of money that is flying around washington in the form of special interest. Like I said an opioid epidemic is a gift to everyone except those who really need it the most. The main reason they can get away with it is because the pain patient is weak and cannot fight back, so all these groups and individuals can make their careers on the backs of the weak, absolutely shameful. Even the CDC cannot tell us the actual numbers of the epidemic because it lumps all the drugs together, the illicit and prescription, why not separate the two? easy, the true numbers would come out and these people could not make their careers. Let’s face it none of these people could get away with it in any other case, imagine congress taking away peoples guns because too many people die from gunshots, doesn’t not happen because they are strong and fight back. A pain patient is a completely different story. My wife has been a chronic pain patient for more than 2 decades and has approximately 10 surgical procedures a year just to maintain her. In all that time, even 20 years ago, doctors were careful on how they would prescribe, blood work was taken to make sure she takes the pills she was prescribed, and even pharmacists would caution and be on high alert. For the chronic pain patient the high scrutiny has always been there it has never been a relaxed environment, which is why we know the prescription epidemic is false and purely for the profit of others. Not saying there are not people who have died from abuse but it is not the chronic pain patient. I get so ANGRY with this abuse placed on those who should be getting the most support. Yes it is now time to fight back collectively.

Thomas Wayne Kidd

I didn’t say that I will be 67 in July. And I have sent comments to President Trump without any response whatsoever. I have for most of my life suffered from chronic pain. I the medical records to back it all up, but this is something doctors don’t want to discuss. I am trusting in my Redeemer and will accept whatever comes my way. I just bought some Kratom to try for this pain. Has anyone else out there tried this and does it actually help?

Thomas Wayne Kidd

I certainly feel for you dear one. I have been fighting uncaring uncompassionate doctors for most of my almost 35 years. I have been on Methadone for 30 of those years. I have been a model patient as well, but this doesn’t matter! Yes we not only collateral damage but worst of all our rights under the Americans with Disability Act has been violated without regard to legal ramifications on the part of Doctors and Pharmacists who excuse themselves by claiming fear of the law. Death continue on the streets and the saddest part is that chronic pain sufferers are committing suicide and many have died in withdrawal. Still those who are supposed to be treating us with care and compassion ignore us. I also have Narcolepsy and could totally loose it at one of my appointments. I am totally feed up hearing about CDC recommendations and most of all them looking at me and lying through their teeth. They have reduced my daily dosage to the point I am being mistreated. I am also tired of being treated as a criminal. Their mistreatment has messed up my treatment of Narcolepsy, but that’s not important to those who care only for themselves and their bank account. I am sceptical about what, if anything will come of the HHS review and the Congress and Senate when it comes before them. I have sent letters to my Congressman and Senators but have been ignored because of their uncaring, uncompassionate feelings about their constituents. We are living in a wicked and evil generation. Thank you again. I pray for those who are suffering. T. Kidd live long sufferer. I truly understand!

Malissa

Thank you! You are a voice to many of us suffering unnecessarily due to the supposedly opioid crises. I was taking vicoden responsibly and complied to everything my doctor requested of me in order to continue working full-time. I no longer work. My doctor said they no longer allowed to prescribe these meds. I was given lyrica and due to the many side affects can’t take it. I’m fully disabled now. Please, please continue fighting for us. God bless you.

Anthony Harding

I can’t wait for these law makers to to have an accident and feel the pain that pain patients do. Or even better I hope they have a wife or husband that is in so much pain that they see it first hand , so they have to watch their live one or child suffer and in pain. And see . I’ve hand pharmacist at CVS yell and scream are

Jill

The problem was your thinking you could get your meds back after your break. You logically thought “I have medically proven reasons for experiencing chronic pain so why wouldn’t they help me with the meds that worked in the past?” But logic plays no part in this ongoing fake opioid crisis and you unfortunately found out just how self concerned physicians can be when it comes to their careers. I’m so sorry you’ve found yourself in this position and hope you’re able to find a way out. I wish I thought the end was in sight for this inhumanity.,

We’re a long ways away still. With actual advocates starting to make noise though, we can hope that there is an end in sight for this little nightmare.

We’ve seen enough. We’ve felt enough. We’ve cried enough. We need to be heard, and guess what? Getting active in whatever capacity we can – for me all I can do is write, and I’m going to start getting loud about it. We do what we can in whatever capacity we can. Start coming up with new ways to get the word out.

All I know is that I used to feel better. I wasn’t out of pain, but it was better than now. I will not acquiesce to this extermination by our own choice theory. I’ve lost friends to this war. I will not be victimized by it. I’ve been through too much as it is – and so – I’ve decided that I’m coming out fighting.

Nina

I’m so sorry to hear the ordeal you’re going through. No one suffering from medical conditions that cause pain or chronic pain should be put through this. I just had spine surgery Feb. 4th and it’s the second one I’ve had in less than 2 years. I’ve suffered horrific nerve pain from my spine and thank goodness my surgeon is prescribing Hydrocodone, but the insurance company is trying to restrict my use. A few days after surgery, the pharmacy told me that the insurance didn’t want to pay because it was my 2nd prescription in less than 30 days. I told them my surgeon decided to write my prescription for 10 day supply in order to keep track of my pain and see if I needed a higher dosage or a lower one. The pharmacy told me to call the insurance and I did. I explained why I had a 2nd prescription a little before 30 days and then they asked me if it was medically necessary for me to have the medicine. I then got so angry and I sarcastically answered and said : Does major spine surgery count?! I finally just gave up on having them pay and had to pay out of my own pocket and have my workman’s comp directly billed. It’s getting ridiculous. I’ve never abused pain medicine and all my doctors can vouch for that. We need to have the laws changed.

Voakley

You have NO CHOICE but to go without meds when the Dr. cannot prescribe them anymore.
If they thought doing this was going to save people, well all they are doing is killing more, imprisoning even more. Wrecking havoc across the world.
This was never about saving lives, of the people who would have ended up addicted to anything and killing themselves anyway. There are a few motivations behind this, from what I have seen, read about, and experiencing myself. So believe people when they say “Dr cut off medicine”. Then when they point you to another doctor. Well it starts all over again. The X-RAY, the MRIs, the waiting for test results. Just to be told you need injections and implants. Which 99.9 percent of us have been through numerous times, and really can’t tolerate it again, nor afford it now
So now what, put us out to pasture. What do they think this is going to do to the future of the generations after us? I was heavy into sports and fitness competitions from the time I was 12. Do we try and tell our grandchildren no you can’t play football, baseball or tennis.
How about the rich let go of the NFL, NBA, NHL and NASCAR and any form of lifestyle that causes damage on the body.
We live life to the fullest and enjoy doing, playing and being active. That is being human. Not a junkie on a suicide mission.
When thoughs of us who do love being able to get into sports are good at what we do, of course there will be damage to the body. Unless you have dreams of being an arm chair quarterback. Maybe a couch potato will make these freaks happy. Obesity is an extreme epidemic. Don’t cheer em on you might tear your ACL, or worse. That’s not allowed because there are no doctors to assist with the treating painful life happenings.
Sound to me like a boring ass place to live.
I am fearful for my young adult children and grandchildren. I really enjoyed competitions, watching my son block a football for a game changing block, sacking that quarterback, my daughter’s cheering.

Penny Elmore

Brings tears to my eyes for her. I’ve had chronic pain for 25 years. I’m very blessed to have the pain doctor I have. He definitely feels the pressure from the CDC\DEA army constantly. I’ve been a nurse practitioner for over 30 years and I also read everything. I never would have expected any group of patients to be treated like chronic pain patients have been. There’s times I think about the Hippocratic Oath they take “to first do no harm”. Clearly there’s doctors violating that oath. Then I know some office’s have been raided by the DEA and the doctor has been arrested for simply doing their job and helping people. There are a few bad doctors, but there’s not a bunch of “pill mill” doctors out there. Most are good doctor’s that have been targeted by the CDC\DEA. The worst part is that there are evil people with a medical license like Andrew Kolodny MD and his army of PROP physician’s. They publish and preach false propaganda and are convincing uneducated or greedy physician’s that opioids don’t help Chronic Pain. He publishes false statistics regarding the addiction rate with chronic pain which numerous research based articles published by Pain mana experts have proven is 1% or less and the opioid overdose epidemic is actually due to heroin and illicit fentanyl illegally bought on the streets. Shame on all these physician’s taking advantage of chronic pain patients and their physician’s because of greed. Healthcare is/ was my career until chronic pain stole everything I ever loved. God bless you, Denise 🙏!!!

Tee

Completely agree.. I know that doctors are scared for good reason . but what really angers me is how now doctors are lieing to there patients when as pain patients we educate ourselves of every law , guidelines, limits.Some seem to be on power trips now cause with current climate they know if they are still prescribing then patient should look at them as Gods because they hold the key to our function in their hands. If they are prescribing they make everything else so difficult in hopes u will want to find another doctor because pain patients are now a liability. U are afraid to tell the doctor of any new symptoms because anytime u do they always want to blame the pain meds it’s never the disease. Patients have lost all power over what is put in and on their bodies and the doctors know it.They will not have to answer to anyone. If doctors really care and are scared like we are, don’t lie, don’t make it impossible for your patients in hopes they will leave.If doctors and pain patients stick together and fight together then we will be heard and change will happen. If doctors just hand over their power and and treat pain patients how the government is then where will it stop? Please doctors we want to trust u we need to u are all we have left outside of our loved ones. Let’s fight together ..

Kenny Russo

I’ve been on Percocet and morphine for 17 years now someone told me about medical marijuana so I talked to my pain management doctor about it. Surprisingly he is all for it. So he faxed my chart (not all of it) aftt17 Years there was a lot. I’ve had therapy, all kinds of injections, you name it nothing worked not even the pain meds they made it tolerable. Finally off Percocet because it wasn’t strong enough anymore. Now I’m supposed to take morphine every 8 hours and 2 oxy’s every 4 hours. My wife added up all the pills I take pain, muscle relaxers, anti inflammatory pills. Heart meds ect. Total was 660 pills a month. So I saw the marijuana doctor. I vape and use tincture oil under the tongue and it’s been 3 months now and I’ve stopped all of the oxy’s and I only take 1 morphine a day. I’m still in pain but nothing like I’ve had for the last 17 years. I can sleep at night and function through out the day like I used to before I herniated all my disks (7) in my lower back. I don’t know if it’s legal in your state but I would strongly recommend it. I’m 61 years old but I feel like I’m 25 again. Thank god florida moved into this century with the medical marijuana because I’m a new person. Best of luck to you

Jennifer Litvenovich

I suffered a work related injury in 2009 which left me with excruciating back pain every day. I had to have several epidorals, discectomy, and a spinal fusion in 2012. Nothing relieved my pain and I also had to have the bolts/hardware removed in 2015 because they added to my pain. I finally had to apply for disability in 2016 because of my chronic back pain. I am now permanently disabled at the age of 42. I have seen neurologists, pain management doctors, orthopedic surgeons, and even my regular doctor with no help for my pain. Everyone of them says opioids are too addicting and won’t be prescribed to me. If I ask for these medications I am treated like a drug addict/junkie. I have never been addicted to any medications in my life. What about the people who have been on opioids for years while managing their pain, did they just overnight become addicts? I am tired of being discriminated as a chronic pain patient. I also wish their was a way to start a class action lawsuit against the doctors/government for the way chronic pain patients are being treated. I wish someone would believe us and give us back what is needed. I relate to all these pain patients and wish I could find a support group to join. We have to keep fighting for someone to hear us and finally help.

Vincent Morraele

One more thing I’d like to add is it is it seems like they don’t want people to feel any effect when you have marijuana that’s on every corner you have alcohol that’s on every corner and you have cigarettes it’s on every corner now that’s quite ridiculous it’s going to take a whole bunch of us to make this better and I don’t know the straight answer but we all have to come together somehow and it seems impossible but there should be a way everybody pray!

Vincent Morraele

Honestly it seems like they treat pets, all type of pets better than they do humans.

Steve

I have already posted every thing everyone has said and been in constant pain from a degenerating spine for 50 years. I’m 66 now and it started in my teens, genetic, my siblings suffer too. I have had enough of living without pain meds for the last 4 months. I see no positive outcome, and no doctors I have seen care. While I do not condone suicide, I do not wish to live in this level of pain any longer. What are my choices? Self-medicate with alcohol till it kills me? I’ve been there off and on till I got pain meds in my forties. I was able to lead a somewhat “normal life” – stayed sober for many years. Able to work a great job for 30 years till my last surgery in 2010, a full spinal fusion with rods, cages, the whole deal. Had to retire. Maybe enjoy things now and then. But now I cannot even enjoy music, as pain nags at me constantly. I wish for death, for nature to take me soon. This is not living. Shame on the medical establishment. First do no harm? What a joke that turned out to be.

Sue Danley

You were able to put into words my exact feelings. Which means there must be so many other fibromyalgia sufferers out there like us that are misunderstood and undertreated. We should all file a class action suit against the CDC and DEA for the mental anguish and physical harm they are causing us all by their nonsensical BS fake news about the opioid crisis. The only opioid crisis is the fentanyl and heroin on the streets, not the law abiding chronic pain patients.

I’m feeling so bad fr u too. I’ve had extrem neuro pain and daily migraines from spine disease. I too am bedridden now. My new pain dr won’t even discuss meds with me plus it took 4 months to find her. The last 19 yrs are a nightmare. And now it’s worse. We are all supporting ea other but most are too sick to send an email.
I wish u luck n prayers

Lorraine

Donna Rock

It doesn’t matter what any of us think we don’t matter.
My story like all of yours is moved to new state, doctor scared to write scripts and patient left to withdraw for days until all the BS was worked out. Now my meds cut from two different drugs to one 2 months ago have been decreased now by 5mg total 20 less per day. And I get to go to Physical Therapy again after being on pain management for last 30 or so years. And I get to try more branch blocks, ablaitions (spelling?) and etc,etc etc. All the crap I have done over and over that doesn’t work for more than the numbing med lasts. Surgical consult HA! was told risks out weigh the benefits… So now what ,oh that’s right sit in middle and suck on it cause I don’t matter!!
Can’t even get a neurologist appointment in this state until August!! Hope my MS doesn’t flare up or that I don’t have another seizure. And empathy Ha! Can’t even get that here, your just treated like a drug addict, even get the side eye from the pharmacy workers. What’s even sadder is I take my med as ordered,don’t share,sell or save them. I excercise,take care of my home, husband and pets. BUT still I don’t matter..If I actually was an addict I would get more empathy, help even meds to prevent withdraw. And people wonder why chronic pain PT’s commit suicide or turn to street drugs. Until our government is able to see the truth that heroin and fentenal are the issues not patients on PM we get to keep trying to function and live our lives the best we can…
Hope they get their shit together soon cause too many good people are suffering. God help us all.

Alex

Hang in there Denise. I too and a chronic pain patient. I have had first RSD and then CRPS since 1992. I used neurontin for almost 20 years and then added – well actually switched to Lyrica which works much better. I too and on Medicaid being 70 and so far, knock on wood, I have had no trouble filling my prescription for an opioid medication which out of self preservation will remain nameless. That medication takes the edge off and leaves me at an 8 or 9 out of 10 but just enough for me to be functional. Ironically I have never failed a drug test and remain gainfully employed. Working is difficult, but staying home doing nothing is far far worse. If you move it you lose it – truer words never spoken.
I don’t know where you live, or even why Medicaid did what they did to you. I have no respect for your previous doctor. I have been known to remind members of the medical community of the oath they took. I too deal with a condition most of them have never heard of and I really do get tired of explaining it only to hear “well you don’t look like you’re in pain”, my response…what does pain look like? A frowny face?

Rosalind Rivera

I can certainly feel for this writer as I too am a chronic pain sufferer. I too have Fibromyalgia and Systemic Lupus Eruthromysis. I also have Arthritis as well as several other chronic conditions.
Several years ago, I tried getting off of my pain medications. It was the worse 13 days of withdrawal followed by increasing agonizing pain that any human being should have to go through. My medications are also being lowered in both doses and potency with no end in sight. My pain management doctor does not agree with the drastic changes imposed on doctors that are trying to make the difference of survival for his patients. My pain levels are usually at the very least an 8/10 on a scale of how much pain I’m in. I for one will do anything within my power to make decisicions regarding my pain management up to my doctor as no one but he knows what I go through on a daily basis and not individuals that know little to nothing about how chronic pain sufferers manage to live day to day.

Cheryl Ford-Marosi

The supposed Opiod Crisis has become a blatant violation on Patients Rights. An indirect violation of HIPPA! You have the Federal Government imposing medical orders on patients who they know nothing about. They have accomplished this by a direct threat to our physicians declaring they ban patients from a medication that has successfully helped thousands of patients with their medical conditions. The Feds have violated patients rights and HIPPA by compromising our health and wellness removing us from medications that have successfully been proven to help us survive. By the feds doing this, shouldnt our debilitating health …pain..and death be the legal liability of the lawmakers who have essentially violated our patient rights? YES INDEED! We as patients have rights. By threatening our physicians and ordering a ban on the medications prescribed for us based on our diagnosis there darn well has been a violation of patient rights. Things like this happened in Nazi Germany. “SURVIVAL OF THE FITTEST” as I recall. We must be alerted to what the Government is accomplishing by removing medications known and proven to help thousands of patients to survive. We as a society must fight back and not allow this to happen before they openly march us into gas chambers!

Maggie King

Amen sister!
Fibro is still met with skepticism or downright rude denial. But my FM was the basis for my SSDI app in 2005. 3 weeks later, my family barely survived Katrina, and our town was blown apart.

By the time I was ok’d in 2008, I added OA, DDD, sciatica, MDD and PTSD to my list.
Like you I’ve been a compliant patient in PM since 2006.

In 2017, my meds were cut 50% due solely to paranoia. Then the MD started purging his patients, with a state of false positives and negatives on UAs! I had no opioids 2 months (which is impossible but who believes you over the doc?) I thought it was just me, and they didn’t discharge me. But I told them I was going elsewhere (biiiiig mistake) Later I found out scores had false UAs. One guy tested positive for cocaine. He went asap to outside lab and his hair test proved MD wrong but clinic closed in a blink permanently.
PCP won’t RX opioids, half the PMs closed, the rest are a nightmare to get in, then steroids, CBT PT…… we’ve been there already!

I wish you the best. Ive spent my life advocating for environment and mental illness. Time to advocate US.

Cary Cassell

Yes Denise you’re right it is BULLSH#T . Legacy pain patients do not actually feel better after they quit taking their pain meds for a while. There is good reason we are taking them in the first place ,for us it was the last option when we first started taking them,and I know I wouldn’t have taken them thirty years if they were not effective.
I guess we are not “loud enough “ as I also have contacted all my politicians on multiple occasions with little response back. One thing is now certain. This situation is not just unexpected consequences to legislators trying to fight the illicit overdose problem. All the politicians have heard from us by now and they have made the decision they aren’t interested in our side of the story.
It’s going to take a major catastrophe to get their attention on the problem. A suicide/murder of a politician,a powerful celebrity making a major campaign because they are watching a loved one going thru this . I don’t know but I’m sure it’s no longer unintended consequences of well intended legislation people in power are aware, they choose not to acknowledge the problem.

Kris Aaron

Draconian laws against opioids were put in place when Prohibition ended (1930s) at the behest of people in power who feared the consequences of immigration: more darker faces at the polls.
Harry Anslinger, appointed by J. Edgar Hoover as head of the Drug Enforcement Bureau, whipped up anti-immigrant sentiment by touring the country while ranting about black, Asian and Latino men lusting after white women as a consequence of their drug use.
That it’s happening again is undeniable, with our president bellowing about “sh#t-hole countries” and equating immigrants to “rapists, drug dealers and murderers.”
Less than 1 percent of pain patients become addicted to opioids, but the government – and malpractice insurers – are happy to rip prescriptions out of our hands and condemn us to a life in hell because recreational users are overdosing on illegally imported fentanyl. Are immigrants with darker skin really that threatening to white America?

Glen Cooper

I read here from time to time, however with my pain and medications I sometimes lose track of time and passwords. There are so many people complaining and it goes no where. These websites worry so much about security that I get tired of trying to comply. I would rather have people email me to compare efforts to get help

kelly

I’m so sorry you’re suffering also. This is beyond insane. And now “they” have decided, based upon what lack-of-evidence I don’t know, that everyone with fibro must come off opioids immediately anyway b/c supposedly they make the fibro worse. This flies in the face of experience of everyone I’ve ever talked to that has fibro, including myself, but who listens to or believes anything a chronic pain patient says these days? Certainly not any doctor I’ve spoken to since my former doc retired…she had fibro, among other pain conditions, & truly understood the reality. But this myth, like the one that says anyone taking over 50 MME per day will die instantly, & all the other LIES, has very quickly become imbedded in the medical pantheon & will be nearly impossible to pry out. My new doctor announced all these myths to justify cutting me off my pain meds –everything wrong with me is caused by them, he insists, including conditions that I had for decades BEFORE I started taking them (now THAT’S strong medicine! It affects you many years before you even take it!). You cannot fight delusions like that with reason, or anything else.

I hope someday this national hysteria-driven sadism goes down in world history as one of the most shameful crimes against humanity. I grieve for the millions of us who will suffer the tortures of the damned, and kill themselves, in the meantime.

Marie Gafney

This whole anti Opioid rules for people with chronic pain is B.S. It is not getting the majority of drugs off the streets . But it is driving pain patients to the streets for relief and is also driving chronic pain sufferers to suicide. Why are there no lawyers to start a class action suit for chronic pain sufferers?

gary-raymond@outlook.com

Denise, we are not collateral damage. We are targeted for extermination by our own hand.

Cindy Calhoun

Your biggest mistake was going without the pain meds…..that only makes them think you don’t really have to have them.