The Collateral Damage of the Opioid Controversy

The Collateral Damage of the Opioid Controversy

By Ed Coghlan.25

One of the National Pain Report’s many excellent contributors, Dr. David Nagel and I were chatting by email recently.

Dr. Nagel, who wrote an excellent book on chronic pain called Needless Suffering; How Society Fails Those With Chronic Pain, has been speaking on the issue since his book came out.

I shared with him what feels like an intensifying anger and parallel hopelessness that has set in among some of our readers and presumably among many more chronic pain patients.

I was reminded of that interchange last weekend when I chatted with another friend of ours, Michael Young.

(Past Articles on Mike Young)

You may remember Mike, a retired Michigan firefighter who was injured in the line of duty and has suffered from chronic pain for the past 20 years.  The combative Irish-American was full of energy and enthusiasm about fighting what he considered to be a wrong—the arbitrary reduction in his pain medication.

He was working to bring the issue of how opioids help many chronic pain patients sustain a normal life.

I hadn’t spoken with Mike in a while, and when we caught up Saturday, a lot of the energy and enthusiasm was missing. It was replaced by anger and not much hope.

“I’m desperate to address my chronic pain especially since it looks like the reduction in opioid prescribing is going to be permanent,” Young said. “I was just turned down by my insurance company for a spinal cord stimulator because I had not had  a failed back surgery.”

Young’s story is repeated daily in the commentary section of the National Pain Report by patients who are frustrated and don’t know where to turn.

“Why aren’t people listening to the chronic pain patient?”, Young asked. “We are collateral damage in this war against opioids.”

Young, who is a remarkably candid man, says he has lost forty pounds and is down to a scarecrow like 135 pounds. His appetite and his energy level have sagged in recent months, while his depression—and resulting hopelessness—have increased.

“I’m really pissed at the insurance company, the government and the lack of organization of pain patient advocacy groups,” said Young. “How can this happen to us?”

He goes to counseling, has tried acupuncture (his insurance doesn’t cover that either), exercise and other alternative therapies.

Now being turned down for the spinal cord stimulator has him wondering what else to try.

Back to Dr. Nagel. He’s giving a talk this month entitled:  “Pain, Opioids, and Public Policy;  The Art of Creating One Public Health Crisis Out of Another.”

For Mike Young and for hundreds of thousands chronic pain patients—they hope someone is listening. Because Congress, the FDA, the CDC and others apparently are not.

Featured image: Michael Young

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Authored by: Ed Coghlan

There are 26 comments for this article
  1. Sharon T at 7:45 pm

    I too have suffered chronic pain for many years until I came as near to death as you can by trying Tylenol back then. I’ve had pain management since and I’ve been able to be a functional part of life at 67 after suffering most of my life. Pain kills your will and tears you down until you’re no longer can continue.

  2. M.Billeaudeaux at 12:56 pm

    In regards to the recent changes due to the drug epidemic, a Chronic Pain Patient’s Protection Act is an excellent idea. Suggest this to your congressmen/women, your physician, your pharmacist.
    Please, I cannot stress this enough, unless we collectively and strongly write or email or call our representatives’ nothing will be done to prevent more damage. We are being lumped into this group of contributors to the drug epidemic. Many of us have been taking pain medication long before this crisis. We abide by our physician’s instructions. We do not sell medication. We do not leave our medications lying around the house for anyone to help themselves. We do not give our medications to others (believe me, they are too important to our well-being). We do not take illegal drugs. So why are we being punished? Because we are the easy answer to questions no one can answer and find a solution for. The solution is much bigger than curtailing our prescription pain medication. The answer is with and only with the addict themselves. Until more insurance coverage is offered for rehabilitation and many more follow-up treatment centers are available and treatment for the addict is addressed limiting our medication will not help one single addict. Addicts will find their drugs no matter what is taken away from us. Are the pharmacies too ignorant to see this? Are our leaders too ignorant to see this? Are some physicians too ignorant to see this? Evidently, they are.
    Today, make a commitment to yourself today and write or call your congressional leaders. Without our voice, without our voices loud and clear it will only get worse for all of us!
    Don’t forget to include a letter to Dr. Tom Price, Health and Human Resources Secretary.
    Please try and remember to not go into too much detail about your illness. Briefly, state your condition because they will not read the letter entirely if you go on and on about your illness. It’s not that they make not care, it’s because usually, no one else wants to hear of another’s ailments. I apologize for saying this but I think this is too important. I care about your illness but they may not.
    Thank you for your taking time to commit to this issue.

  3. Carl S. Dunn at 4:39 pm

    I had a scoliosis and spinal fusion was performed successfully at age 17. Unfortunately, it messes up the geometry of your posture, how you stand and walk. 30 years of hard physical work took it’s toll as well, so now at 60, my lower back is now chronically painful. I used pain meds for over twenty years at work to get through the pain to work efficiently. Now on disability and withdrawing from all opoids, I am facing a future of back pain which incidentally worsens if I do any activity. Faced with diabetes which worsens with inactivity, increasing obesity because of no activity, I feel that the knee-jerk reaction of our politicians is nothing but a dog and pony show made up of smoke and mirrors to obfuscate the fact that they have failed to stop the increase in deaths from opiate abuse of addicts. As we all know, those in pain management getting opoids are mostly in compliance with the rules, however, many deaths from overdosing as caused by taking benezodiapamines, (with herion and fentanyl) like Xanax which attenuates the effect of opoids. So, what can we do but seek to force our lawmakers to differentiate between the lawful chronic pain members who follow the rules and those who are out of control. We as this group must organize and march, if possible, or begin a writing campaign on Washington and local state government centers and protest loudly for our rights! Nevertheless, I am now seeking pain management here in Florida and just heard Gov. Scott asking for a 3 day limit on opoid prescriptions! Now what do I do? I swear this seems like George Orwell’s “Big Brother is watching” is taking place! Our gov’t has failed to control the addicts from overdosing on illegal drugs so they want to do something, anything to appear they are doing their job, which is misguided to say the least. Picking on the easiest target in the cheapest way and looking like a hero to the mothers and fathers of overdosed dead sons and daughters on the backs of those legitimately needing relief who don’t abuse drugs is a huge crime on society. Yes, I am truly sorry these addicted children passed away to abuse, but let’s focus on the real problem here; illegal drug use! Go after the real issue and leave us the hell alone! We are not the problem! The leaders of our great nation are simply passing the buck and not seeing the forest for the trees. As usual. It will take a catastrophe of suicides before the realize the simple rule: the law of unintended consequences. What do they think will happen when the prohibit doctors from helping the truly needy chronic pain patients? They will go to the “speak-easy”, the street, for heroin and fentanyl. Just like the prohibition of booze! Have we forgotten the past? Those who forget the past are condemned to repeat it. And absolute power corrupts absolutely, like “Big Brother” is doing with controlling prescriptions. Resist and revolt by writing legislatures now and never stop telling them you will with-hold your vote for them next time! They will listen!

  4. Brett Husebye at 2:33 pm

    Actually all these people involved in making decisions have their dirty hands in the Insurance Industry and since they lost money on “Obama Care” they are screwing the pain patients to make up for their losses. I have no doubt in my mind since seeing the chaos they started down in Florida to pull the most needy of kids with heathcare needs out of Medicare with an agressive phone “questionaire” that was more than questionable and they saved millons and many of them suffered and parents of those children were not allerted they could get back into the system. Anyone that answered incorrectly was pulled out instantly thus saving the state Medicade program money. The Attorney General is a waste of space for letting this travesty go on with Pain Medications for people ho desperately need them. I am a chronic pain patient and I can say that this is definitely causing me to be in more pain. I get tested, I take my meds when I am supposed to, I follow the program to a T and yet some supposed Experts in pain that recieved their degree on the back of a Cocoa Puffs box said I get in pain I just shake it off, we need to learn how separate Emotion from our pain. Leave me alone with the idiots in a room with an aluminum baseball bat and lets see if they can shake off the pain and separate the emotion from Pain for the rest of their lives. Pain never goes away for some and opiates help dull the pain so we can live meaningful lives. Not laying in bed, not paying taxes, not doing anything but moaning and crying out. I have woke in my sleep when things get bad crying and If they keep cutting my meds it will happen again. A cycle of pain during sleep leads to a waterfall of pain later and letting it get out of hand, will only cause it to get worse and worse until I am incapacitated. I spent a whole year getting home only to have to go directly to bed after work because my bed is the most comfortable place in my house, I do not want to be in that situation again because that is not life, it’s death and I do not want to be just cast aside or thrown away like a piece of trash. I am not addicted, I am dependant!

  5. Thomas at 10:52 am


  6. David Cole at 8:58 am

    You know I’m more afraid of my government than I am a terrorist. These people have went after the most vulnerable of our citizens, the disabled elderly and Wounded Warriors. They’ve ruined hundreds of thousands of life’s. It’s extremely hard for pain patients to mount a good opposition to these insane policies, as most of us can’t even think half of the time. From the time we get up to the time we go to bed, all that’s on our mind is pain. I just want to know how many of us have to commit suicide, kill somebody, turn to illegal drugs or just live in hell before somebody gets it in their head that one-size-fits-all policies never work for anybody. I almost smashed into a car full of kids, because all I was thinking about was the pain. Everytime I write a note to the governor, senator, congressman, I’ll I get back is some kind of a form letter that they sent me two or three times before. Ninety-nine per-cent of all chronic pain patients of good law-abiding citizens. The government needs to go after the criminals and leave us and our doctors alone. The CDC is already admitted that prescription drugs are not the problem any longer. (They never were) Since 2009 opiate prescriptions have been going down, yet opiate-related deaths are going up. As far as I’m concerned or Healthcare is being run by educated idiots with absolutely no common sense.

  7. Kel b at 12:43 am

    For those who haven’t heard back from your representatives. Keep trying! I’ve recd phone calls from congressman Gallagher, letters and emails from Johnson, Baldwin. & even a letter from Trump. All regarding pain meds and guidelines. I’m still trying to reach Gallagher back to actually talk to him, but he did say he wants to make sure that those who need meds should and will have access to them.
    Please don’t give up, keep calling, writing & emailing. Try Resistbot- texting, they write & send as well for you. Free. In a matter of a minute. 2

  8. Cheryl P at 10:13 pm

    I totally can relate to Mike and will keep him and other chronic pain suffers in my prayers.
    It is totally ridiculous what they are doing with our medications and treatments.
    Lock up the drug abusers instead of giving them clean needles and not arresting them. We are not the criminals and we are the ones suffering.
    My insurance cut back my dosage. I’ve been in PM for 6 years I guess my insurance would rather pay for expensive epidurals than medication.
    I hope and pray that someone with a brain will realize what a crock of crap this treatment is.
    AND I wish there was some way we could all bring lawsuits against the Insurance companies for unnecessary pain and suffering.
    Thanks for letting me rant I could go on and on but I better not. 😜. Everyone try to have a blessed day

  9. Maureen Mollico at 9:39 pm

    I remember Mike well. It broke my heart reading his update. It literally put tears in my eyes and fear in my mind, since we are all in this huge boat together. I feel his agony, his depression, his hopelessness. This has all gotten way too out of hand. As I read everyone’s posts day after day…I feel like I’m reading a nightmare novel.
    I will be praying that Dr. Nagel’s talk will be heard but all the right people and may the tides be greatly turned.
    Keep strong warriors!

  10. janice at 6:11 pm

    After reading the above stories, they are tragic. Yet as September passes to October many chronic pain patients suffer. Is there any way to have a type of a class action lawsuit? Could anything something be done. This is shameful. This is not medical care being practiced on us . This is an ugly and subversive type of genoside . What can be done have any person who is contemplating suicide due to chronic pain write a note explaining what they have gone through, experienced and suffered with. Would that change things once the suicide happened and the note read? It’s time to use litigation . Sue the doctors that don’t treat your pain. Sue the individuals and inities that claim n cry opioid crisis the only settlement accepted should be one of change for the chronic pain patient. Sue the dr who doesn’t treat you properly with in impedence. Etc. I can’t see a way out of this as for I suffer too and it makes my heart and soul bleed for so many who also suffer needlessly.

  11. Sandy M. at 3:25 pm

    Wow! I agree with all of you. Mike, I’m so sorry to hear about you and your condition. I understand the anger so well. This just isn’t right! And, nobody cares, we are just a drug abuser if we take any kind of Opioid so we can exist, even when we have always stretched our medications, and never tried to get our meds earlier than we should.

    My husband was a firefighter for our city and was injured while employed there and his neck is a mess! He could be paralyzed if he isn’t careful. He use to be able to do all the things that needed done to keep up our home, around our house and he helped and taught our girls and their husbands how to do all kinds of electrical repairs, etc., he could work on about anything and figure it out. They always called on dad. He is not able to do those things now, he has trouble breathing, his BP is so high. He worked for over 22 years at the fire dept. and wasn’t 100%, therefore, he had to take a disability retirement. We were blessed and had insurance thru his employer up until a few years ago when the City sent out this case law “precedent” that had nothing to do with our fire department, nor was it in the same county, but same state. The worse state in the union, Illinois, home of the Mafia………….and the old guys from the 60’s who are now Professors and running our government. Now, both my husband and I are from the 60’s too, so I’m not putting down people from the 60’s. They were the best years of my life!. I will be 70 in October and pray I don’t live much longer with this pain. I’ve watched our grandchildren when they were babies and they are growing up, the youngest, a little girl who will be 9 next month. My husband, in fact was drafted and served on the USS Enterprise during the Vietnam War and was spit on when he got home. Now we have those who opposed the war, and trust me, we do not like war either, but he was drafted while John Kerry, the Bill Ayers of Illinois, and his wife who murdered and kill people are professors in our schools and some of our colleges. Our youngest daughter’s thinking is totally different since getting her Master’s Degree. How can these people be teaching our kids, I just don’t get it. I am not referring to all schools, colleges or professors, please don’t misunderstand me.

    I had a hemorrhagic stroke in the right thalamus, that has left me with a pain condition, “thalamic pain” or central pain I think they call it now. This was 17 years ago and I’ve been in pain with my back since the early 90’s. I worked over 35 years as a legal secretary and now know nothing about Medicare since we lost our insurance. I know so many of us are in terrible pain, I have horrific pain 24/7 and spend a lot of time in bed, which I’m headed to right now, I can’t text well enough on my phone because of the pain in my arms. There are so many different pain sensations with this condition, I can’t explain it. If I didn’t have this condition and someone tried to tell me about it or tried to explain it, I would not understand it, so I usually don’t get into all the pain to everyone. It has something to do with the motor cortex in the brain, so I’m just screwed actually. I feel like I’m on fire, and it took my neurologist and I almost 5 years to find medications thru trial and error, to at least give me an hour or two a day of a little relief. Then I had Scoliosis so bad, it only took doctors over 20 years to find out my back was deformed. T hey just wanted to use our insurance and shoot me up with injections. I finally found a great surgeon who showed us the x-rays and my back looked like the letter “C” so I had surgery from the T-3 to even a little below my L5-S1. I was on the table 9 hours because so many procedures had to be done. I’m all metal now. Maybe I can be scrapped after death and be worth something for someone! I still have Degenerative Disc disease and facet osteoarthritis along the lumbar curve and still have Rotatory dextroscoliosis at L2, so I still have a lot of pain, It seems to get worse now after 4 years. After both my stroke and back surgery, and after attending all these “amazing” pain clinics that are recommended to us, I had every injection known for my back, more than twice, each pain management doctor thought he was better than the previous pain management doctor. I had a Diskogram that is so painful and got messed up one time so bad that I had to have a Blood Patch. I’ve had PT so many times, my neurologist finally told me to stop it, I was making my condition worse. My muscles are so tight…..spasticity and hurt something terrible. I have tried so many medications for both my stroke and back pain, my face burns, My body is so sensitive I wear soft pjs all day, I’m not going anyplace anyway. I can’t stand to wear clothes, different materials, cold air, riding in a car and so many other sensations keep me down most of the day. I still try to do some chores, I have to try to keep going. Most of my thalamic pain is down my left side, but both my arm muscles are so bad, and the medication I take for it is one of two that I cannot take the generic because of side effects, diarrhea, stomach cramps, you guys know the grind! And I don’t sleep more than an hour or two at a time, I finally got Medicare thanks to my doctor to prescribe the brand name for my muscle pain and it cost $177.00 for 30 days, Now, I have 8 other medications I take also, so I now know what people meant when they said they didn’t know whether to pay a bill, buy food or buy their medication. It’s just awful! I had heart surgery also, and these insurance companies keep wanting to change my medications. Why? If it isn’t broke, don’t fix it, you know?

    So yes, anger, hopelessness, scared what will happen next and so many other anxious thoughts go thru what brain I have left every day. I’ve never been one to lay around, I worked all my life, I have never had pain like this in my life and so many doctors do not understand what “thalamic pain condition” or central pain is. I have boxes of medical reports and articles I printed out after my hemorrhage and was diagnosed with this pain condition after a stroke in the thalamus, and I’ve noticed the articles use to say opioids helped pain because they would bind to the receptors or cells …. can’t remember exactly… memory needless to say, is not very good, but they wrote that opioids were the best thing for pain, MS, CRPS, so many different conditions ……. can’t remember, but my point is compared to what is being written now about the pain condition is that opioids do not help pain makes me sick.

    Someone here mentioned our U.S. military guarding the poppy fields over in Afghanistan, well I found a photo on the computer of exactly that. Most of our governmental officials are so evil and crooked, they only care about themselves and the next election. I’m so sick of these guys telling us what to do instead of our doctors who went to school for years to learn what they are doing. All these departments who are taking over our lives is leading to a one world government, so what are we to do? There is no use going to school to be a doctor, the government will be telling us what we can and cannot have or do. I would love for some of them to live in our bodies one day, but then they will always have good insurance, get the medication they need, so most will never know what we live thru each day.

    Thinking of all of you, I share your pain and grief. I wish I could do more to help, but I can’t walk very far or sit very long, the pain is always here, but I keep trying, I love my family and they do understand which makes my life a little better, however, unless you have the PAIN, you will never understand.

    Take care everyone!

  12. Alison at 3:21 pm

    1. Insurance company will no longer pay for my medication (fentanyl patch & morphine)
    2. Ok then, I can pay for it myself, though it is expensive. (better option than living with
    the pain)
    3. Pain management says, if insurance company won’t pay for the prescriptions, we won’t let
    you pay out of pocket for your meds, “because it might raise eyebrows.” WTF?
    4. Insurance company suggests yoga, meditation, massage, etc…
    5. No other pain management companies within my area are taking new patients.
    6. December 8, 2017 = last day for medication.
    7. In pain management since 2001. I am an exemplary patient..pass all urine tests, on time
    to appts., don’t drink or smoke, stick to medication prescribed, eat & exercise for health.
    8. Why do I have to go back to suffering 24-7 pain because of others misuse of

  13. Barry Raymond Noel at 12:07 pm

    I can relate to mike. I have been on the same dose for 8 years. I can get by on it but not do much. Now they are reducing it to take it away. I dont feel well enough to be the husband and grandfather i should be. I dont like drugs but it is the only thing that works. My tolerance is very high. But i didnt get like this going out and partying. Doctors did it to me so i could work. I am now to the point after 3 back surgeries that i cant work. Now i cant find a doc who gives a darn. Thanks for letting me vent. Barry

  14. BL at 11:56 am

    Kimberly h Faulkner, the FDA took Opana ER off the market. They did not take Opana Immediate Release off the market.

  15. M.Billeaudeaux at 11:55 am

    Heather, thank you for your comments. Please do call your state representative as he has asked you to. This is the first time I have read someone from Congress has actually responded to one of us. Make certain he hears from you and from all of us behind you. I have written to Senator Price, Health & Human Resources Secretary and have never received an answer. Today I will write to my local congressmen, and hope I do hear from them. This is our only resource, our voice, make certain they hear from you somehow, whether it be a letter, an email, or a phone call, do it, make those contacts as often as you can so that they will hear the other side of this crisis, the pain patient crisis. Thanks again

  16. M.Billeaudeaux at 11:42 am

    This is an outrage!!! Is there any congressmen out there who will listen to us and try and help us? Are we to go home, crawl in bed, wither up and die? Evidently, this is what the establishment wants us to do. What are they to do once chronic pain, cancer, or any other painful illness strike them or their family? The pain patient’s fight of the 70’s and 80’s is nothing like this. The only medication out there that actually helps up live somewhat normally, and/or work full time jobs is being taken away from us because of what other people have done! Not us, but others. Go figure this out. We are not to blame for their addiction, we are not the cause of their addiction and we are definitely not the answer to their addiction. By taking away our medication will not help reduce the number of overdoses annually. The addict will get their drugs regardless, while we are left suffering.
    We are NOT the answer to this epidemic, we were not the cause of this epidemic. I try and find some comparison and it’s hard, but the closet thing I could think of is the alcoholic. There are millions of alcoholics in the US, and many die each year because of alcoholism. Did the stores quit selling alcohol? Did the government interfere with store owners’ decisions of what to sell? Were stores limited on the amount of alcohol to sell and for how many days?
    NO, this didn’t happen because most don’t want to be without their drinks everyday, or on the weekends. So why us?
    I feel as if I am beginning to live in a police state, told what to do, what to take, what to eat, what to drink, how to live and how to die. ENOUGH IS ENOUGH Stand up and write to your congressmen, your pharmacy company, your physician, the Medical Association, everyone you can think of who may impact us in the future. This is getting very serious. Just once, I would like those who restrict my medication to walk a day in my shoes, just once.

  17. F. S. T. at 11:29 am

    These comments are heartbreaking. The agony of being in chronic pain with nowhere to turn for relief is palpable in the very words the sufferers use. Yet, our cries for help and relief fall on deaf ears. Why?
    My meds have been cut way back, and will be cut again to “bring me and the Prescriber into compliance” by year’s end. (Quotation mine, but it’s basically what they’re doing.) Again, why?
    Forced to retire from my beloved profession of Nursing at age 52 because of chronic illness, I found a “new” life at home, doing things that needed doing. I immersed myself in Bible courses by mail (which I’m grateful to have done!), reading, sending pretty cards to shut-ins (like I now was), traveling to the pain clinic two or three times a year for a stack of prescriptions to be filled at the appropriate times. So, for years, I was doing just fine on my previous dosages, thank you very much. I was able to be a part of my community, to some degree. I could go to church most Sundays. I could play with my youngest grandsons. I could even stand to cook a little. Life with chronic illness wasn’t great, but it was good. And manageable on my prior dosages.
    Suddenly, the powers-that-be decided my life was not worth living. I was no longer trustworthy with controlled-drug prescriptions. Drug testing and pill counts were implemented (which I still find distasteful and humiliating). The news headlines convicted me of being nothing short of a criminal because my chronic pain was being managed. Why?
    I’m now pretty much back in the house all the time. I’m in the bed much of that time. I’ve let friendships go, because I have nothing to offer but “I’m hurting” and my friends don’t deserve that. Why? The answer must be that
    the powers-that-be apparently can’t catch the illegal drug traffickers, so they came after me and you because we’re standing still and unable to run. Easy targets. So they took the only thing giving us a life – relief from pain – and pat themselves on the back for essentially just throwing us away, saying “We’re curbing opioid use!” Yes, they’ve succeeded. They’ve succeeded in directly causing the uptick in chronic pain patients’ suicides. And they’re driving chronic pain patients underground – as in, to the streets to ironically develop working business relationships with the illegal element the powers-that-be were too inept to stop. So, in coming after US, we’re being made to turn to THEM for supply.
    Do the powers-that-be not see what’s inherently wrong with this picture?? Where is the justice in this?
    Like others are doing and have suggested, communicate with your local, State, and Federal representatives. We MUST. This madness needs to stop.

  18. Carole Porter at 10:48 am

    I am so sorry that Mr. Young is being subjected to this uncaring that is resulting in his lack of medical care. I’m a pain patient too and I’m damn sick of being the collateral damage for this ill-advised war on opioids and pain patients. We are a totally separate intenty from the addicts. Most of us require pain control to function at even the most basic level. When and where will WE be heard?.

  19. Debra at 7:36 am

    It’s a horrible situation chronic pain patients are in. I just heard the other day on CNN that CVS Pharmacy is changing their policy of dispensing opiods, they will only dispense one week at a time, they will decide if the proper strength is being given, lowest being preferable and customer will be informed by the Pharmicist about addiction. Cvs does not sell cigarettes anymore, however they continue to sell alcohol. Also they are moving all the “goodies”, candy and salty treats to the back of the store. This is rediculous.

    I’m 65 and feel like I’m living in a nightmare. War on drugs is this? People will turn to street drugs in desperation in releaving their pain, crime rates will rise as will suicide rates.

    This is a horrible situation. Those who are fortunate to be financially secure will obtain relief for their pain legitimately and the rest of society will suffer.

    What happened to this country that I love? Is there somewhere in this world I can spend the rest of my life not fearing suffering needlessly of pain because the government of the United States wants to control us?

    Sorry for going on and on, it’s just become so difficult to live in this country.

  20. Cary Cassell at 5:01 am

    Anger hoplessness of course. Thats how any body would feel when you are in constant pain and the cdc and dea are forcing guidelines that do not fit everyone upon you causing even more pain and anxiety .So tired and ivd been fighting this for so many years the fireman is right …nobody listens or will do anything about it . My prediction. .more suicide s.

  21. Rita KIMBEL at 4:57 am

    No one is listening, it’s the worst feeling ever. I wish the person responsible for starting the Opiate regulations will stand up and show his or her face to chronic pain patients. One by one hear our stories of suffering, look at our families and the look on their faces when they ask what’s going on with our medicine. My children are at the point of disbelief. We have lost a family member to heroin overdose and that makes my problem with opiate restrictions very hard for my distant family to understand, why I’m not ok with the reduction. I tell them to keep their hands inside the ride, because if they ever get injured and need help with pain medication the only thing you’ll get is an Advil out of your doctor. I’m not invited to family get togeathers this year, I guess they’re afraid I might ask for support. It’s pretty bad and I know it’s going to get worse. I hear we will be going to the pharmacy (CVS) once a week to fill opiate prescriptions, I will boycott them if that happens. I’m at a loss for what to do next. My PM doctor has me under the milligram restrictions now and wants to reduce it more when MMJ becomes legal in PA. I’m scared as ever to feel the pain, as it was over a 10 on the chart, before my neuro stimulator implant and opiate therapy I wanted to die. I can’t be in that condition again or at my age now I might give up the fight.

  22. Kimberly h Faulkner at 4:46 am

    I have been saying this for almost 4 years. I live in Ohio and doctors even give you a list of all medications they will not prescribe. Not just pain meds but ADHD. I have sever rheumatoid arthritis, fibromyalgia, emphysema, cystitis in my bladder ( it cracks and swells and bleeds every time I have to pee), I have IBS with constipation… I woke up one day in 2008 i was 32, and felt like a Mack truck had run me over. It got worse as the day went on. By 10 pm that night I couldn’t bend my knees to take a bath, I couldn’t dress myself hold my 2 year old son, open a bottle of juice for him, I could get in and out bed without my husband lifting me out, I couldn’t turn a water faucet on. I was a full time mom of 4, worked as a home health aide 50 plus hours a week, took care of the shopping and cleaning and so on.. I also attended college to get my respiratory therapist degree, I had 2 semesters left… I struggled with out much pain medication, it didn’t seem to help more than just sleeping and Advil. I started on pain medication (2013) after my pain had been so bad for 2 months I feel passed out from lack of sleep and about sliced my eyelid off in the bathroom on the sink. even while going through 80 percent of medications for my illnesses to only realize I was allergic to them. I can’t take the main meds for RA they are TNF blockers, it can cause medication induced or activate a gene for lupus and Muscular sclerosis (MS). My sister has lupus my mother had died of MS that March. We finally tried one, with in 5 minutes I had a rash over my entire body, blisters covering my entire inside of my mouth and in my nose. So to this day I have 3 RA medications I can take. I can’t take meds for my fibro I’m allergic. I take a low dose of steroids every 3 months. It helps but I still suffer a lot and so does my family. My youngest son is 12, oldest 2 are 21 and 22. I just had a grandchild this year… I was so happy when my doctor finally heard my plea to up my meds, but felt he didn’t want to up what I was on first he would try a different one at the same soae and see if it would help. I have been on the same dose to about 6 years now, and I live with the left over pain. Pain meds just make me agitated so I don’t care for them unless I’m in such pain I’m crying. Well, my doctor is in Indiana because when we moved there he got me through it all in 2013. When we came back I tried to switch to my old rheumy and he sent me to a so called pain clinic. They tried to take me off of all medication I had been on for 5 years on the second appointment…lol the first appointment they upped my medication without even doing a drug test. Their reason was is because I was holding g scripts. I handed them back one of the ones the had written me because when I got to the pharmacy to fill from the new doctor they had already filled the other. I didn’t think much of it. My doctor in Indiana always gave me 3 months scripts at a time. I went back to my doctor in Indiana and explained and h3 said he would continue to treat me. So he has. Now Indiana is telling doctors what and how many scripts per month they can write for their practice. So… he put me on a pill that wasvthe same dose as I was on, but I different one and this one the government would rather see prescribed… it workedbgreat for 3 months no painnn no muscle spasms got to hold my grandson and be a part of daily life in my house instead of just mornings help with homework and making dinner other wise I was in bed. Now this pill has been told by the FDA to remove it because people whom never even had a script for the medication found new ways to abuse it and shared needles and got sick. Sooo here I am again back on the medication that barley curbs my pain. I can’t even hardly carry my grandson now. I already have one wrist fused with a salvage procedure that had 3 tendons ruptured as well. I am told by doctors all the time I am diseased.. I have no tissue in my body worth them fixing or repairing… I had to go to 8 different surgeons and got turned away, I wasn’t worth repairing.. or having to stay in a hospital for a procedure that would be just fixing dead diseased tissue. I’d finally had enough and went to see a top doctor at Cleveland clinic. Who was a plastic surgeon bit loved working in the hand clinic. He made 3 people check to make sure he had gotten my xrays and not so.ebody else. He just keep looking at all the black discoloration on my xrays on the wall behind me.. he quickly said well I can see why your in pain but you just need to get different medication. He first offered to cut the nerve in my wrist, so that hopefully I would have relief from the pain. He then proceeded to stand up and say well I’m sorry and walk out. I told him I came to the best because you should be able to find a solution.. I’m 33, not 66. I have a 2 year old I would like to be able to hold someday again. He finally took me serious, I had however driven 6 hours just to get his opinion. He wanted a total wrist replacement I qualified, but I was to young the insurance woudlnt cover it. So he wanted to do this salvage surgery and cut the nerve… again with the nerve. Then I told him, I am not in my 60’s this will not be the last issue with this wrist that he couldn’t cut my nerve because of he did. I wouldn’t be eligible for a full total wrist in 15 years the nerve has to be viable. So it took him until my rheumy called him 2 months later for him agree to do the surgery. Was supposed to be 2 hours it was 6. Once again he had given me a nerve block take home contraption. We went back and forth to Cleveland clinic 9 times from Sept 2 until Dec 2 nd. To reduce casts and such. My family never in 2 years of crying to get dressed or get in and out of bed or all the other countless activities I couldn’t physically do without wishing somehow I could cut my hands off. But that would mean I would have to use them…lol. when they saw the cast and the pain pump all of sudden everybody wanted to help me.. My husband God love him, wanted to know if I needed help her to g the shampoo out of the containers as I laughed he was very confused. I said I haven’t been able to use this wrist for 2 years… you’ve never asked to help before, so how do u think I’ve been washing my hair all this time.. puzzled he says I don’t know I never really thought about it u til now, because I couldn’t see you were actually hurt. I said well I’ve adapted to getting myself and our now 4 year old bathed and dressed and in and out of cars and stores by squeezing things between my knees. He said sorry and left me be. My now 12 year old looked at me the other day and said, mommy do you think something is wrong with you and the doctors just don’t know it yet. I had gotten an infection from being at the hospital with my daughter and her baby, so I couldn’t hardly function. I always try to be up and moving and a part of my families LIVES when they are home. So I sleep when they are gone. So for about 3 plus weeks I couldn’t even go to his baseball practice and such. I hide my pain 98 percent of the time. Until I can’t handle it and my husband will have to run knots and such out for me. I wait and wait so I don’t put it on him. Men want to fix what’s wrong, they are not good to sit aside and not be able to resolve the issue. I suffer in pain quietly. I have learned to ask for help, but I still get looks from the pharmacy because of my meds as though I’m the “opiod” problem… I take my medication sparingly because I don’t want to have to depend on it any more than I have to, but some how, someway I am always made to feel like I am the problem. I have to het drug tested at every visit and stand and get an attitude from the pharmacy about my meds… and fight with insurance companies to pay for it. I use creams, lidocaine patches, I soak a lot in tubs. I bought out of pocket a tends unit. I buy a new bed or topper when I feel my hips and joints have to much pressure. We are the collateral damage in this scenario no matter how u look at it. From family to government to doctors to all of thr ignorant people whi say, well she looks dine to me what do u mean she is sick. Why can’t you stop dropping stuff mom, hey why can’t your wife put away her own lawn chair it can’t be that hard to bend back closed…to the blatant disrespect for all of us chronic pain. Sufferers who don’t know if we will have pain meds next visit or ever again after. They call the opioid a crisis an epidemic are you kidding me… heroin and powdered fentynal that is hospital grade that is from a lab. Our government ignores that… they can trace where it comes from the medication is coded they can trace it. But no… the government wants to just charge at us whom need medication. Then you have the 3 states that for basically 4 years have written less and less scripts and doctors and FDA still say it’s all because of the opiods… that led to the use of heroin. Are you just, crazy. If it has here in Ohio is because people are left with no options no alternatives for pain. The government has created this epidemic, they can het big money from treatment centers and methadone clinics… I will not survive of they take my pain meds… I and many others are being left out in the cold. Those who did prescribeto people maybe the shouldn’t have and those people abused or sold or whatever are bad apples…but not all of us are like this. I told my doctor at my last visit… with all the technology in this world why can’t they code every batch of every medication with its own lil rid bit a type of signature to trace it back… stop the heroin at th2 sources. Also, why can’t they put a small chip in my body that once a day I have to scan it with a application or device that comes with it and then your levels go right to the doctor. If your abusing they would k ow fast… and could cancel any other meds or have your name put in the list of do not dispense. I feel the government has done a bait and switch. If they blame prescription drugs for the problem and scare people about it… everybody stops looking at the real issue the real drug addicts the real drugs of death… heroin, and so on. I can’t even het my fentynal patches with out a headache every dam month wh2n I was on it… nut people are somehow getting gallons of this stuff. How… is it okay to remove a pain medi action the effectively helps a lot of people who use it correctly and have for years, all of a sudden be yanked off shelves… because addicts I texted themselves and others with hepatitis outbreak and because we don’t punish the crime part of doing drugs anymore… I’m sure they have free health treatments there in Indiana and some free methadone as well… that keeps them so loopy they can’t even walk without falling over. I want to know how our government is ok with protecting those who OD over and over and free healthcare and free methadone so they don’t use street drugs… but us the pieces left behind and doctors who have to tell their patients sorry.. I can’t help you. How about we het some machines rigged up to cause the pain some of us suffer with daily for these people making these laws and see if they still don’t think chronic pain should be treated. If it was a dog you would, if it was a horse you would or at least you would be kind enough to pit the poor animal down. This is my body and my life I want to be a part of. I missed 2 years of my life while they diagnosed and played with medication s because I could not function. All I could do was sleep and take hot bathes. Then het in bed and lay as still as possi or so I. Would go back to sleep. It’s unfair these decisions should be your and your doctors to make. Not the government. They are going to end up with a larger problem on their hands… when people are filling hospitals from pain or bed sores or even more troubling heart attackes and strokes from your pain level being so high… it’s already happened to me. I almost died in Indiana before I was dragged by my husband to the hospital and then to my rheumy. My pain and no sleep had messed with my body so badly the ER doctor while stitching my eyelid back together said he didn’t know how I even was walking let alone anything else. Because my blood pressure had been so high for so long it finally dropped that night to like 52/40
    I would love to know how we can come together to change this from being done to us. I read on one of these comments that they are listed as terminally ill and then the doctors can treat them with their pain meds. I have 2 conditions that I’m told if I ever needed a transplant or certain surgeries I wouldn’t be a candidate for it… because my body is diseases tissue that attacks itself. I am 41, and I have already lives this way for 9 years I have a lifetime of it and I can’t even enjoy life now… I still spend more time in bed compared to living because they won’t put me on a dose of medication that helps. So I’m already just existing… our rights need to be heard and changed. If they weren’t feeding us all this food in the US that other countries won’t even allow to be sold in theirs maybe we wouldn’t be so sick to begun with… any information at all to help or at least be able to be present at the meeting that are deciding our fate… how, how can we/I find this out.

  23. Heather at 4:36 am

    This is all so true and horrifying to say the least. I myself and also being weaned off my Morphine ER I’ve been on for years with no changes because my Dr is in fear of his license and said he will not have the government in his office. This is so neglectful and inhumane to pain patients on so many levels. And forget the abusive and barbaric behaviors of the ER. I will not ever go back. You are automatically an addict in their eyes NO MATTER what after you give your med list to them and they are you take opiods. Our Dr’s should never be in fear for what they worked hard to earn and they document real and legit info on medical records about each patient. We have diagnostic testing repeatedly and bloodwork over and over to prove we have pain. But nope let’s make everyone do alt therapies. Well I have multiple times and failed. Last time I was told by PT my body is too fragile to do any land machines and could only do water therapy. So I did. I have to say it hurt but the best therapy I had done. We bought and above ground pool so I could continue since I lost my job after not being able to return from my hysterectomy in 2015 which has since chamged my life forever. I had been in pain for many years prior and seeing all the different types of Dr’s but that did me in and when I had to switch ins to my husband’s, who the beck can afford $200 per visit 3 x week for therapy until a $4000 deductible is met. So if they want people to try other therapies maybe ins comp should cover them. Also WE ARE NOT ADDICTS. WE ARE REAL!!!! This is all steamed from heroin with fentanyl epidemic and overdoses as we all know but no one seems to care. Just punish the ones who are doing and taking meds correctly, under contract, have to take drug test every 3 to 6 months, do pill counts when asked, use the same pharmacy. Seriously. And yes my Dr had a printout every visit from the pharmacy site that tells when with date and time and what pharmacy I got my meds filled. So it is monitored closely. We are the victims and seems like a little bit of population control as well. They don’t care if we suffer of are bedbound or not recognize or discuss the fact that SUICIDE RATES ARE SOARING AMONGST THE PAIN COMMUNITIES. This should never happen due to lack of treatment from the medical world. As a nurse myself I would never refuse a patient pain meds, I didn’t care of they were laughing. Its called COPING MECHANISMS, just like we put that FAKE SMILE ON BEHIND TEARS and PAIN. SO ITS TIME TO CONTINUE TO MAKE A STAND, SPEAK UP, LET OUR VOICES BE HEARD AND CONTONUIOUSLY WRITE TO YOUR LOCAL REPRESENTATIVES AND FEDERAL AGENCIES INCLUDING THE PRESIDENT AKD WHITE HOUSE. I have never gotten a response back from the federal government but I will keep writing. But good news is I did get one back from our state representative asking me to call and discuss my concerns so he could being it up on next Congress meeting. And I am going to do that. We MUST NOT STOP….. OUR VOICES ARE JUST AS IMPORTANT AS ANYONE ELSES. SO FIGHT, FIGHT, FIGHT!!!!!

  24. Isabel Etkind at 4:03 am

    The inability to obtain proper pain management for a variety of painful conditions has resulted in a distrust of not only Our Government but also has eliminated many visits to see the doctor when the primary symptom is the pain. Since Patients know that their pain will either not be treated at all or ineffectively treated most will not bother seeing a doctor unless the problem does not resolve itself. What is lost here is usually the time where a problem may not have escalated yet and may have been treated in a less costly manner now has erupted into a full-blown medical crisis. The stress of constant pain on the body also increases blood pressure and is resulting in an increased number of Strokes and Heart Attacks. Aren’t you glad that instead of wasting a few hundred dollars on proper pain management that our current idiocy will result in extended medical care in the hospital and usually in a rehabilitation center for a while after a heart attack or stroke? Instead, now long-term care and possibly additional caretakers and services at home will cost hundreds of thousands of dollars per patient will now be a an economic burden to all and result in increased insurance premiums, deaths and other healthcare expenses that were caused by a stroke or heart attack that should have been avoided in the first place. WE NEED PEOPLE IN OUR GOVERNMENT THAT CAN THINK AND REASON!!!!

  25. Paul Clay at 3:26 am

    As someone that has dealt with overdoses in the ER for the past 20yrs I couldn’t be more frustrated listening everyday to news report about how bad the opiod epidemic is. BS. They always say we have a prescription drug problem and nothing could be further from the truth. The prescription drug abuse ended about 6yrs ago when the primary care physician quit writing them. Anyone that is getting pain medicine today will tell you its probably easier to get into fort knox. im thinking on my next pain doctor visit they will want blood for dna testing. pardon me, but this shit is rediculous. The abuse today is 98% all illegal narcotics. With heroin being the number 1 abused drug. when is the government going to realize the problem is not with the medication. the problem is with the addict. Lets say that again. The problem is the addict and until the government acknowledges this and is prepared to spend billions on many rehab facilities (locked in mandatory 6-12 month) facilities the problem will never go away. They could ban every prescription drug on the planet and addicts will be using whatever they can manufacture. The addiction needs treated not the medicine. I dont know the numbers, but I imagine suicides are on the rise from chronic pain patient. im tired of the increasing paper work and contracts the patient has to sign. you get put on whatever your medicine your doctor uses and thats where it stops. there is no management. no changes in meds. no increases. we have villified all language regarding pain so now the patient cant say anything to their doctor about the meds without immediately being labled a drug seeker. i only saw my pain doctor on my first visit. i cant even see him. no i get the practitioner everytime..for 7yrs now.
    you would think with neglect in care that some great attorneys would think of a legal means for lawsuit. im sure one exist