The Chronic Pain Patient – Chronically Misunderstood

The Chronic Pain Patient – Chronically Misunderstood

By Liza Zoellick.

It’s 10 o’clock on a Friday night and you have already taken your pain meds, hoping and praying that they kick in, but it’s already been two hours so any hope of a pain free night is quickly receding. This isn’t the first night you’ve tried to sleep while in pain and the days aren’t much better. You struggle to get through the day in pain and then take up the battle at night trying to fight through it. If the pain were not enough you find yourself having entire conversations and arguments with your doctor, in your head. You become a brilliant attorney who can counter every argument posed and, in the end, you stand, the victor with a bottle of pain medication in your hand. Any of this sound familiar to you?

I think we have all been here at some point in our effort to manage pain. We realize that our pain medication is not working the way it should and we get caught in this endless loop of how to word it to our doctor without sounding like we’re jonesin’ for another hit. The reality of this pseudo-crisis has made the lives of pain patients everywhere extremely challenging. At a time when our sole focus should be learning new and possibly more effective ways to keep us functioning at our best, the majority of us are worried that:

1.) Our pain medication may be drastically reduced

2.) That our pain medication may be terminated altogether or

3.) That our pain management doctor or even staff in hospitals, will see us not as patients in pain, but people attempting to manipulate the system for drugs.

This is a terrible, terrible burden to be suffering.

Imagine: A freak accident. You couldn’t help it, you weren’t doing anything to invite it, but it happened. You break your leg. The pain is excruciating and your family brings you to the emergency room. You are whisked in and doctors are looking at you and you get x-rays done and you suffer the agony of people prodding you and then setting the bone. But in all this chaos you are very keenly aware that no one has administered pain medication. You begin to ask doctors, nurses, anyone who will listen. “I need pain meds. Please.” They turn and look at you, then look between one another as if trying to determine something. You realize that what they are trying to determine is truth. They think you are lying about the pain. You become angry and the pain seems to intensify with the surge of anger. You start yelling at them. Your language quickly devolves from civil to profane. Worse, is that your expletives have not motivated them to do anything and they turn away from you while the pain saturates your being and you feel as though you will suffocate from it.

Liza Zoellick

Does this sound like some scene from a horror movie? Unfortunately, for many of us who struggle with chronic pain/illness, this is very much a reality. My vignette is not even about a chronic pain patient but think about this a moment. We would not hesitate to give someone who broke a limb or suffered a gunshot wound, pain medication.  Though I understand the climate surrounding long term, opioid use, I am also someone who struggles day to day with pain. I am someone who has looked into the face of a doctor and seen distrust in their eyes. I am someone who has also has been on the receiving end of verbal distrust from a doctor and made to feel not only like a liar, but ashamed that I have to ask for pain medicine. Instead of feeling like a patient and receiving compassion from a doctor I am made to feel like a villain.

It alarms me that those sworn to a field of compassion and healing have twisted information that will shape the lives of pain patients now and in the future. I worry about my future access to pain meds. I worry about those dearest to me, such as my daughter who has recently been diagnosed with my same issues, how she will deal with her pain in the future. There is a sea of faces of those who struggled with pain/illness who lost their battle, unable to deal with the day-to-day pain and who succumbed to the horror of it. We live one pain pill at a time. This in no way means we are abusing pain meds. It means that in order to live, the lives we have been given, to the fullest and in a certain degree of comfort, we take these pills. Without it…

I don’t want to get to that point. I have many, many days ahead of me. I have a future and I have goals. The only option that I have before me right now is opioids. Opioids are not a cure and I am not pain free on opioids but, I have a better chance at seeing my goals realized with the pain medications. I know that for some it is really impossible to get around the idea that the benefits of these drugs outweigh the negative, but they do. They do for me and because I want the chance to live the best life I can I feel I should be allowed to give myself the brightest future possible.

Liza is a chronic pain warrior from Houston who has been chronicling her journey through chronic pain and illness on her blog: http://lovekarmafood.com. She is a contributor to the National Pain Report.

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Authored by: Liza Zoellick

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Karen Harris

I’ve been disabled for 23 years. I have a rare disease called RSD. I’m so afraid that one day soon I’ll go to my doctor to be told sorry no more opioid. I’ve been taking them for 23 years just to get out of bed. They don’t take away all the pain but it’s all my doctor is allowed to prescribe. 3 years ago my doctor gave me something that let me live a painless life. I enjoyed going to church, visit my friends and go shopping. Now I have a hard time getting out of bed, driving, or enjoying my life. It’s hard to smile or be happy which is effecting my marriage and relationships with family and friends. I just pray that Washington will take another look at how many lives they are destroying.

Ellen

As I told before CVS pharmacy had told me they ordered to months worth due to complicated paperwork they had to do and Once I drop my chronic pain med prescription off before they fill they had call provider; I spoke to head pharmacist after I picked up my scripts from same pain specialist on Tuesday 5/8/18
When my adult daughters dropped them off like always told them they can not fill anymore My eldest went back after head pharmacist came work and told not fill anymore
So I called and yes I was upset she lied the day before and I said I deserve a month notice to prevent severe pain and withdrawal and yes in my anger because she would not give me a MME said it was combination meds which I have been on over 10 years and actually on less extended relief so I said if I get pushed to suicide I will have my adult kids get a lawyer and sue ; she did not speak with compassion or try see if I was at risk say anything kind just made me feel more suicidal by telling me since I used word
lawyer they would not fill any more of my meds Levodopa
Propanalol etc Well I looked up their policy since she lied and told my kids it was over issue of being over 90 MME and policy stated could go up
To 200MME after review with MD I am not close to that dosage
So While I am on phone with corrprut pharmacist in Rhode Island ( CEO makes over 12 million a year) the cops show up because I had used word suicide in fear but local on Wednesday evening no one checked I explained I said for now out of anger to not fill this legitimate prescription so it felt like I was being threatened and intimidated by their corrprupt office because I said “lawyer”
Then the next evening Two people show up no names just business card I would not let stranger in my house but again felt intimidated and in fear I could be put on a three day hold by using a word in anger and
Fear and I gave the police my therapist phone number who I already put a call into and what about HIPPA privacy and one of them yes doing their job but ai should get a card with their name One had the audacity suggest cannibas marijuana How dare they I-have a pain specialist this is private and a pharmacy has no right to put me in withdrawal or severe pain I was already having such a worsening of my dystonia my head hurt I was vomiting and then I can not take the Levodopa it is like gas on a fire
I found another pharmacy who was shocked I will let my representative in WA state know this and my therapist

Cathi Rusk

Please research KRATOM!! It works for us chronic pain patients! The dr. Cuts down your meds or stops giving you anything for your pain. KRATOM is truly a life saver. It makes the withdrawal of opioids almost gone. It works on pain! Please research KRATOM

Wow, Truth 100% especially with all the allegations of “us” Chronic Pain Sufferers supposedly abusing our meds. It’s a shame we have to fight so hard to try and stay human, its the same here in Canada.

Lynn d Gouveia

OMG !!!! Liza , you couldn’t have said it any clearer or more accurately, then if I wrote or said it myself !!!! THIS IS EXACTLY WHAT I FEEL , and all I can do is hope the appropriate agencies hear ALL of our concerns , fears and extreme challenge’s we’re faced with everyday ! But it’s so much more than what these politicians are doing to our pain management care every time they preach on TV ! They are literally SABOTAGING US !!! They’ve no idea that chronic pain sufferers (like me , like us) contemplate suicide on a daily basis , or at least I do , because there’s no quality of life !!!! Yes , I am in therapy , but not as much as I should be BECAUSE I’M IN SO MUCH PAIN , I can’t travel to my appointments !! What is it going to take ??, an enormous suicidal rate of people suffering like me , OR will I STILL be statistically categorized as “drug addict & accidental overdose?” Trust me , I’ll make sure I leave a detailed letter to Congress, DEA , and the AMA , as well as my family why I finally took my life because I succumbed to the horrific chronic pain that could’ve been treated better !!! SOMETHING’S GOT TO GIVE !!!!!!

Hayden

I have tried to talk myself out of pain now for 23 years. Especially for the last year and four months. My lowered dosage of 80 percent of medication used for over twenty years, the same medication has cost me, like others I read about, my business of over 37 years, my life savings, any social/family participation, ability to worship religiously as I please, ability to even keep up with normal hygiene. This all after over a year of using cbd oil (no thc, illegal), kratom, combinations of advertised natural foods claiming to help with pain management and any and all legal remedies. All medicinal alternative pain management for back surgeries were attempted decades ago.

It is obvious that our “experts” in pain management, policy makers, did not have a clue what problems were to begin when the CDC “policy” for opioid prescribing doctors became enforced by the DEA in NC over a year ago. It does not seem to matter to the policy makers, the “experts”, that the existing policy of a uniform dosage of opioid medication, a maximum dosage for one and all without regard to ANY patient documentation of the sucessful use of opioid medication to the patient in excess of 100 mgs per day of “morphine equivalent” may not be an adequate dosage. NO room for debate wihin the “experts” of the medical community or the medication specialists and especially no debate from the patients ourselves. Our doctors know that the current policy of opioid medication prescribing is not successfully logical for all long term opioid medication patients.

Doctor and patient reasoning, testimony of the harm inadequate pain management dosage is causing is NOT being received, much less considered by the “experts”. Even with reported suicide as the last means to end the continuous pain emerges and has, almost from the first of 2016 when the DEA started enforcing this policy upon our doctors. Unfortunately I have personally heard from a medical professional that these patients are nothing more than “drug addicts” which quite literally pi$$es me off! Bad! We, the patients along with our records and documentation with the type medication, dosages, and negative issues, if any has been kept on each and every pain management patient whether seen by a specialist or a family doctor for years and decades. Scrubbers, e-scribe. Just another way for our own dot/gov to keep an eye on our own citizens who have committed….no crime.

Brian

Thanks for sharing, I’m in the same situation only I’ve recently had my pain meds revoked and was told that the alternative is “stretching and bending & Tylenol”. I’ve got injuries in my neck, mid back and low back – and yet I am still active, living in the country, cutting 4 cords of firewood a year from out in the bush, working on boats and restoring motorcycles. Yeah stretching and bending really helps NOT. I get back spasms so bad that my pain specialist’s nurse was in tears one day. Fortunately, I only took my meds “as required for pain” literally, so quitting was only a matter of accepting more pain.
Over 80% of opiate OD deaths are caused by fentynal manufactured in illegal labs for street use, not medicinal product manufactured and distributed through the mainstream medical care system, in either Canada or the US. But in “stopping the opiate crisis”, we legit pain sufferers are being stomped on, as if sledgehammers are appropriate tools for killing mosquitos.

Luanne Armstrong

Yes, this is my situation as well. My doctor went so far as to get me a book from the library on hysterical pain. Geez, it didn’t help. Surprise. I had/have a brain injury, rheumatoid arthritis, and heart fibrillation. So I was told by all my doctors that I must be depressed and that was the cause of the pain.

Alan Edwards

We are intractable pain patients, chronically misunderstood and mistrusted. “Intractable” means chronic pain which resists everything but the opioid or endorphine or morphine molecules produced by most healthy people. Yes, look it up. Dreaded morphine is produced by our own bodies and a few
picograms may be in our bloodstream.

Yep, I am looking for alternatives. No, that and that and physical therapy has not helped. Nor will it help a burn victim or a pancreatic cancer patient. The acronyms in power are going to have to delete the words “intractable pain” from all sources. They now deny that pain, pain as symptom, and pain as a nervous system, musculoskeletal destroying entity exists. And they want those false notions in everyone’s mind .

My goals and jobs were halted by intractable pain and the incurable conditions which I carry.
I came off pain meds easily. So folks don’t believe that stopping opioids is impossible or that you will vomit or have the flu or suffer withdrawal pain. Tapering is effective. My forehead is on the kitchen table several hours a day, seven days a week when amitriptyline withdrawal starts again. Windows and waves with that drug. Not so with lortab.

The prescription pad came out recently. Trazodone was prescribed. A Trazodone stroke followed. Aspirin unblocked the 15 hour trazodone-induced vasoconstriction in my brain.It was accompanied by a mega- headache extending to my upper jaw and teeth. If I only had taken the aspirin sooner. The misery stopped 7 minutes after taking aspirin. But it prevented brain trauma. No more Trazodone and hooray willow tree!

Elon Musk has no intractable pain nor do our government acronyms, evidently. My goal is to finish commenting and put my forehead on the kitchen table for now. Amitriptyline pain again.

I am appreciative of your article, Liza. And admire your ability to function in suffering. Writing a long article can cause severe pain, cramps, and fibromyalgia.

JoAnn Kulaski

I am at my wit’s end..the DEA has caused fear in my Pain Specialist and without compassion my opioids have again been cut in half. I’ve never abused my meds and only take them when absolutely necessary in order to function to a minimum level of existence. I fear I am being left with no choice but to consider an unthinkable end. I don’t understand why our government thinks it knows better than my doctor. God help us all who live a life of chronic pain/illnesses. Surely we do NOT deserve this inhumane treatment…we did NOT ask to be ill.

Mary

Patients who are diagnosed with intractable pain (i.e. non-cancer pain) must ensure that their physicians (specialist or general practitioner) document their condition in each clinician’s chart. Mistakes and omissions can happen; if it happens with “paper” then it can occur with EHR (Electronic Health Records) which is rapidly replacing the traditional chart.

A very good overview on intractable pain as a diagnosis with its assigned ICD code (used for diagnosis, treatment protocol and insurance billing) can be found here: https://www.practicalpainmanagement.com/resources/intractable-pain

All affected pain patients, their spouses, family members and loved ones need to read through this overview and understand how untreated intractable pain can inflict physiological harm on the suffering patient.

Much scientific research was conducted and published two decades ago. And it was based on science and scientific principle – not witch hunt hype!

Notice
Hello ACLU and Legal resources – PLEASE help diagnosed patients in our plight! We are legitimate patients who were diagnosed by our specialists who determined “WHY, WHERE and WHAT” was causing our intractable pain. Our Rx opioids should not be forcibly reduced because of making public health policy for intractable pain treatment “POLITICAL” in its approach. Such a reduction is capricious, unscientific and amoral.

Laurie

This opoid “crisis” is being ginned up by the republican Justice Dept, helping the DEA continue it’s War on Drugs.
Doctors, pharmacists and hospitals are fearful of losing the accreditation and the Pain patient suffers.
I have a little-known, genetic neurological movement disorder few doctors have even heard about. My muscles were actually pulling my bones apart before I got Botox to paralyze the muscles…after awhile, it wasn’t enough, cause it spread to my should and arm.
I have, because of the ignorance of my primary condition, been under medicated for pain most of the last half of my life.
I saw them ramping this up several years ago and realized right away that the DEA needed a new War because they knew they were losing pot to attack people with. They’ve gone after the innocent victims of health troubles not the Chinese Fentanyl and heroin muled in by who knows who. Just last week, Dem Senator Schumer proposed a bill legalizing marijuana.
I thought “here it is”.
The virulence and vindictiveness that the DEA and the colluding doctors ( afraid for their licenses) who have no other resource to help many patients is truly staggering. The attacks on the American people’s health must be stopped. This is draconian and cruel.
It’s all about the money now. Cui Bono.
Never allow them to make you believe YOU are the problem.
The new research saying that over the counter pain meds are just as effective is pure baloney and the research flawed and biased and never peer reviewed. It was tested ONLY on inflammatory condition, but the media made it sound like all pain can be treated this way.
I have a neurologist I don’t trust now and live in constant fear he’ll just cut me off, even tho I’ve never exhibited any of the signs of addiction.
Our medical system has now become one of the worst in the world…..the least they can do is treat our pain with medicine that has been used for thousands of years, is effective and has way fewer side effects than most.
God help us all in this now benighted country

johny

Forced off meds that give you hope for a better future is not the solution. The meds we take let us be present not escape from our problems. Most of us are in starvation mode with our pain out of control.

Tammy

I also have felt the same way as many others do. I have been lowered so much by my Pain Physician ( Due to the DEA and CDC Guidelines) that I’m not even for sure if the medications even help me anymore.
I once lived a somewhat normal life when I was given the proper amount of medication but now mostly I just lie in bed, hurting.
This treatment should be considered CRUEL AND INHUMANE PUNISHMENT!!!

Are we still supposably living in “The land of the Free”? If so, then why punish us chronic pain patients that depend on our medications to help us?
I see more and more each day of this Once Great Nation becoming communist and it breaks my heart!

Michele W

This is me. After 14 years of being on a pain med, they took me off of it and said that young people can’t get pain meds anymore. Only old people are aloud pain meds. He literally told me to take a BUNCH of ibuprofen and Tylenol! I’ve already had the ulcers from this when my pain first started. I was in an accident when I was 16. I had my right hip dislocated. The doctor punched it in so hard that he rotated my hips. Instead of being straight, the right side is pushed up and left is pushed back. They didn’t even check any of this and just sent me on my way. My back had to turn and compensate for this. My back was ruined by my mid twenties. Now I have Degenerative disc disease,I need at least 3 fusions, 3 fractured endplates, 3 herniated discs and both of my hips are bad. I am only 41. This is only from my mid back down. I was told right away that this would spread up my back. I have never failed a drug test and I never even went up on the dose in 14 years. I was the perfect patient. I had to be. I have a son to raise. I don’t understand how you can have multiple surgeons telling you your back is horrible yet the doctor all the sudden is oh it isn’t that bad. The surgeon won’t do the surgery because he knows that it doesn’t work most of the time and you become more disabled. Yet the pain doctors keep saying no you need to have the surgery. They say the can only give me Antidepressants. Well I’m on 2 of them already. My insurance refuses to put me on more. They say it’s dangerous. Why should I have my pain medicine taken away because of my age. What does age have to do with chronic pain. Especially like me when you were on a horrific accident. Going by age is discrimination. That’s all there is too it. I thought doctors weren’t aloud to discriminate age. You are sent to pain doctors after all else had failed. They are the last line of defense. I went through everything multiple times. I now have to fight for my life. I can’t live my life in constant pain. I can’t raise my son. He has to help me with everything. He shouldn’t have to do that. It’s one thing if you have tried all, nothing works and you can’t get any better, but I can be better. It’s as simple as medication can help give me back some of my life. Why take that away on purpose and torture someone.

Holly

OMG Lisa! I sit in my recliner and when my pain isn’t controlled I am talking to my Dr. in my head and telling her off! I am being reducing by force and the pain is getting worse. I have been with the same Pain Dr. for 4 years and I liked her! I let her try 2 shots on my back, she got me a back brace, she was so compassionate when I lost my sister and then…………the CDC steps in. All of a sudden it’s a complete turn around! She tells me they are now finding out opiates don’t work like they thought. Excuse me? I have wanted to take the BIG Hippocratic Oath in a golden frame and rip it off the wall!

I agree with you 100%! The benefits of my pain meds definitely outweigh the risks……shucks, the only side effects I have really, is taken care of with Raisin Bran cereal! I have been on them pretty much since 1992.

I pray for guidance for all of us suffering .

Teresa M Surratt

How ironic is it when reading the stories of people suffering from pain is a bit comforting? It is to me. I don’t feel so alone for a few minutes anyway. I suffer from severe degenerative disc disease as well as rheumatoid arthritis. I can remember making the decision in the middle of the night, many years ago, to go to the ER because I couldn’t take the pain another minute. I had a pain clinic doctor but somehow the office messed up and scheduled my next month’s appt after the 30 day mark, therefore I ran out of “opiods”. So its 3 am and more importantly I’m in excruciating pain, the last thing I think of is making myself presentable? Maybe that played a part in this ER doctor treating me AND speaking to me as if I was a drug addicted prostitute off the street looking for a fix. Despite the proof I brought, despite anything. He may have spent 10 minutes doing nothing but talking down to me and glaring at me and I’ll never forget these words, ” I refuse to feed in to your ADDICTION”. My reply, with gritting teeth, ” Sir, it’s not a matter of addiction, I don’t feel like I have an addiction problem, I have a severe pain problem. Despite his ignorant reply I continued to plead my case, more like begging, explaining what areas of my spine are bad and how many herniated discs, collapsing discs .. his response, ” don’t you think you need to look into surgery to fix your problem rather than opiods? ” I was rapidly losing my self control and rapidly not caring if I lost my self control. I was dealt a few more verbal blows, belittling my intelligence, degrading me until finally I got off the bed and walked towards him and said, “Sir, I am a military veteran, a law abiding citizen who has no addiction to ‘pills’, only an addiction to relieving my pain and I do not appreciate the way you are treating me”. What a waste of my breath. Before leaving the room I asked if ny help for me getting back home since I took the ambulance and he said, “we don’t offer that kind of service this is an ER”. 4am and I’m in full blown pain stranded at the hospital. This man had no idea how bad this experience affected me. It really did some damage but unfortunately this would not be the last incident that involved a doctor, someone that I always thought had a caring heart. I mean isn’t that part of why you would go into the medical field? Apparently not, as I would find out over the years to come. Sigh …. how is it that being a chronic pain sufferer is somehow our fault.

Debra

Thank you for posting about this. You have described a lot of my life.

Mike

I have been cut off of my pain medication prescriptions, and my life has spiraled out of control. And there isn’t anything I can do about it because I cant find another doctor willing to prescribe pain meds. I did everything that was asked of me. Its been a year now and I went from wanting to go back to school to find a job i could do with my neck injuries to barely being able to get up.

Kelly-Anne Bryan, RN

I feel for all of you. My pain medicine was abruptly stopped in January by a pain specialist who found himself saddled with quantity overrides and preathorizations for insurance companies, and fearful of DEA scrutiny. He just won’t prescribe anymore. Neither will anyone else for 100 miles. I was responsibly taking opoids as prescribed for 9 years, enabling me to function somewhat and sometimes work limited hours. No more.
The withdrawal was horrific and put me in the hospital. Unrelenting, severe pain coupled with financial ruin. No means of continuing my expensive fight against my underlying illness, long misdiagnosed Lyme disease. I have no more hope. In the last 12 weeks, I have spent a total of 9 weeks hospitalized for suicidal intentions. Not one doctor would treat the root of my problem: pain. Each time I had to lie that I was safe, leaving the hospital more angry and frustrated than when I went in. My psychiatrist recently added “opioid use disorder” to my major depression diagnosis. Thanks, doc. How is this false diagnosis going to help me?
There is nowhere to turn. I was in the ER this week with a new, painful problem. My pain was 9 out of 10. I got Tylenol. How is this OK?
I am not safe. Neither is any chronic pain patient in the U.S.

Paul

I’m currently detoxing from fentynyl. I was also on five other pain pills. I went cold turkey and got off them. Fentynyl is definitely harder. Down to 25mcrgrms from 150., but it’s a struggle. Pain is back and im wondering if I’m making a mistake.

Deborah Boyd

Unless someone has dealt with chronic pain they do not know. I had two surgeries in 8 days but doctors don’t want to give you nothing in the hospital hardly for pain I have suffered with the bill of tithing migraines and cluster headaches for years I was in a wreck and hit from behind I have a back issue I cannot stand for more than 15 minutes and it feels like my back is being ripped apart but you’re treated as a drug addict you just want to be able to function in your everyday life the drug addicts are the ones that’s going in lying to Dr getting the pain medication selling them to people that are doing street drugs along with them that are dying from overdoses but people who actually suffer pain each and every day of their lives or the ones that’s paying the price the government needs to reevaluate all of this and stop making chronic pain sufferers suffer the consequences.

Geri

Sadly we have become a political football for our politicians who are endorsing “rehab” not because it is good for us but because rehab facilities and jails are money makers for the corporations who are their true owners.

Lori T.

Thank you Liza for your “oh so familiar words and feelings.” What is happening now to the CPS is devastating. I cry for all involved with chronic pain that must take opioids for semblance of life. I’m not kidding either when I say I cry for the whole us. Tears are literally streaming down my cheeks as I write this. I am terrified about all these rules and regulations on opioids. I guess I am one of the lucky ones too as my pain specialist has been so compassionate and kind. He has treated me since we took up residency here in Missouri in 2007. I have Crohn’s disease and for those folks that don’t know what that disease process entails, it is an inflammatory condition primarily of the bowels that can cause frequent bouts of intense abdominal pain, extreme nausea, and explosive bouts of diarrhea. I have lived in hospitals for years, heavy, heavy doses of Demerol, dilaudid, morphine, oxy, etc, etc. I finally came across a wonderful pain management doctor that was able to get me off all the IV stuff and condense all the different opioids into just one, morphine. It is a real high dose, 600mg/day, but it worked. I have not been in the hospital again for a Crohn’s flare since 2004. I have semblance of life. I can do things that I haven’t been able to do in years. And now, I am terrified that at any time my doctor might choose to retire early or be forced to taper and completely cut me down to a level that will reverse all the hard work that was done to allow me to lead a decent life. I hate these thoughts that are creeping into my brain of this possibly happening. I am 60 years old. Never abused or misused my meds at all. Show up for all my appointments and drug screens. I NEVER ask for any additional meds even when I have had broken bones. I don’t dare. I make it work with what has been prescribed. I cannot take Motrin or aspirin for obvious reasons, so all I can take is an opioid and a little Tylenol. But since all this opioid mania has been happening, thoughts of suicide have crept in. It is truly a horrible feeling. Just the thought of the act makes me sick but the reality is, if the unthinkable happens and I lose access to my medication, I will not live with intolerable pain and being chained to the toilet having 30-40 stools in a 24 hour period. Not gonna happen. I don’t have a death wish otherwise I would already be gone. But this whole opioid issue is just wrong and it is stressing ALL of us. Thanks for your great article and letting me vent.

Maureen M.

Liza, I love reading your posts…you always help me to know that I am not alone and that you understand my life in CP. Thank you!
It took me months to finally begin a conversation with the new Pain Doc I have been seeing for over a year, about possibly changing my med for better pain control. It lasted all of about 30 seconds at which point he simply said ‘No. We will just keep you on the current regimen’ and walked out. No questions asked, no concern for my tolerance of what I’ve been on for the past 5 yrs. I left just feeling ‘lucky’ that I get what I get and have to accept that.
It’s certainly not like the ‘old days’ of pain management!
I’m so sorry to hear about your daughter’s Dx. God bless you both!
At least she has an awesome Mom to hold her hand through her new journey.
Keep strong! Hugs.

Maureen Muck

Two months ago I fell. Fractured two ribs and had a concussion. Without telling me, the hospital reduced my meds. I went to rehab, where they took away more, yet continued giving me discontinued meds. As hard as I worked at rehab (the therapists praised my work), the medical staff eyed me suspiciously. Two weeks after release, I got pneumonia. Had to go to a clinic because it was the weekend. The nurse immediately questioned my opioids. When I would try to explain, the nurse spoke loudly, over me, and then it happened: I told her to shut up. Couldn’t believe what I had said. It was just too much, I was so sick, and the pneumonia had nothing to
do with the opioids. I have
Trigeminal Neuralgia, Lupus, and arthritis. Oh, how could I forget about my Fibromyalgia? But, my friends, I have never spoken so rudely to a health care professional.
I guess she found my breaking point.

Russ M.

Goals? The goals have been gone for over two decades already.
Plenty of time to go through so many meds, much less potent than the morphine sulfate I take now, in conjunction with Lyrica. Because the pain stems from nerve damage.
And now, well, there’s an “Opioid Epidemic” going on, and the Feds want our opioids cut down to 100 mg per day.
Of course New York State has to stick their two cents in and make it 90 mg.
So, one of the two meds I take, that provide ANY relief from the pain has been cut down to less than half of what it was.
And already, the “quality of life” I have has been pared down to getting out of my bed and making my way to a recliner, where I spend the majority of the day. Can’t do much of anything else, the increase in pain presents that.

How many others are there out there who live the same way? You know who you are, so speak up!
Let John Q. Public know what it’s really like for us all!

Oh, can’t forget the other kicker.
Now, thanks to the Government’s agenda, we pain patients have to live with the stigma of “Addict”.
I’m what’s called “chemically dependent”, meaning that I would experience withdrawal if my morphine sulfate were suddenly taken away, but I’m not an addict.
There’s a world of difference!

Ellen

I agree with everything you said and well communicated I towards the end of my nursing career, lost a career I loved due to my chronic illness, wanted the write a book and it would be called “The myth of the drug
Seeking Patient.” I worked in cancer care most of my career I saw the shift. Not just doctors but nurses used that phrase. It is really related to undertreatment with type and
Kind of pain management
Having a family practice MD Paid by DEA a large sum of money to decide what is not safe and raid pain clinics. Pain patients are being told they must go to pain specialist well then the pain specialist if they are fortunate find one that will provide opiates when a patient is getting functional analgesia and not just a proceduralist giving injections in back or joint. If that works great but it does not for all or last. I read on this site an article that said DEA is going after pain doctors and patients because even though they know the illegal carfentanyl or heroin laced with a powerful form fentanyl is what is causing increase in deaths they do not have a data base for those selling these dangerous combos these illegally but DEA does have a
Data base of pain doctors, the doctors the regulators are telling us to see and get RX for medicine; I and others used to be able to to consult then the “receipe” provided to PCP MD.
Were is the American with Disability act enforcers
Treatment should be patient focused not just diagnosis
Chronic pain patients are being marginalized and harmed by loosing medications kept them focused. We are supposed to accept people with different
Color, sexual orientation, handicap; why is chronic pain the group treated inhumanely
Because of what treatment they need. I have watched many cancer patients, family members with cancer as well as dying from heart or lung disease. Who would want to have to take medicine that at some point you can no longer drive, no longer work depending on what you do as job. I devoted my life to helping cancer patients who sadly die but with comfort
If you don’t have an illness that may kill you then living with pain seems to be your option
Zero pain is not going happen in most cases but the thought of being in severe pain for rest one’s life is too much as noted by increase death by suicide in patients once functional on their opiod doses. The chronic pain community needs stick together and push for better
Care.

JoDawn

So true!! Thank you for putting our feelings into coherent words!

Kris Aaron

True that — every damn word, Liza! Physicians who have little experience with chronic pain patients look at us like we’re the lowest of addicts. They start the “opioids are dangerous” lecture before we’ve even opened our mouths and frown in annoyance if we mention the word “pain”.
We’re barely getting by (translation: not seriously considering suicide) with the prescriptions we have, and have to see those same prescription listed as THE reason for America’s overdose death rate on every news show and in every publication.
Reporters and journalists who should know better are happy to submit agenda-driven press statements from the anti-opioid crowd as fact, without questioning where those “facts” originated.
We MUST SPEAK UP!! We must let the public know that illegal, foreign-produced fentanyl and heroin are killing people, not prescription drugs. We must explain that pain patients with documented medical conditions are suffering and — occasionally — dying because they’re being denied opiates for their very real pain.
We must (and this one is difficult!) present the facts and statistics calmly and rationally, in written form, to our doctors, family and employers. We must be able to back up everything we advocate for with documented proof, not unproven nonsense that sounds all too much like Joseph MacCarthy’s “I have here a list of Communists working in the Federal Government…!!” as he waved around a blank sheet of paper in front of the TV cameras.
Tailgunner Joe’s list of Communists was as “real” as the government’s insistence that prescription drugs are killing 115 people every day. But no one will know it’s a lile unless we speak out and PROVE it!
We not only CAN do this, we MUST. Otherwise, we’ll spend the rest of our lives suffering just like we do now, or become suicide statistics. And those, sadly, are all too real.

Craig Hawkins

The people that’s making it impossible for real pain patients the suffering from pain!I hope one day they have to go through the same thing very soon! Not everyone are Drug attics! God bless yall that are having to put up with this! Not only you half to put up with being in pain but when you go get your pain medicine they treat you as a drug addict at the Pharmacy! I also think all these pain patients should get together like these people about outlawing guns and have a big March at the state capitals! Or wherever it needs to happen! This is just my two cents. I’m not a pain patient but I watch somebody get through it every day! And they are way from being a drug addict! I’ll be praying for all you that half to suffer for other people’s stupidity!

Michelle

I do 17 things a day in my effort to try and live a somewhat productive life. A pain pill is just one of them. People don’t get it. I’ve managed my pain issues for 20+ years. Now d/t abuse of opoids, the people who really need them are made to feel like felons for their request. I thought it was for Physicians and CNP’s to ” do no harm”. Chasing my pain is an issue. It should be controlled.I’m sick of having to jump through hoops to get care.

S. Dixon

Thank you for your article. My life’s a constant struggle because of an inability to function, due to pain and reduced pain meds. Add to it the anxiety of the Pain Clinic and the “new attitude” of the medical professionals and it’s nearly more than I can bare.

Darlene Haight

I feel for you Lisa. I’m just up from a night of no sleep myself, as is my daughter. I am at least the 3rd generation in my family with chronic pain; my daughter & one of my sons are 4th generation. My mother, 84, daughter, 40, & myself, 60, suffer from anxiety/depression/fibromyalgia/osteoarthritis/Lyme disease/heart damage/degenerative disc disease, & more physical issues. My daughter needs a knee replacement, has had 3 neck surgeries (2 to remove her thyroid, 1 to remove scar tissue) & now has another growth in her neck, with another surgery a distinct possibility. Due to her anxiety from these health issues she has picked her skin to disfigurement, scarring her entire body. My son, 42, has Tourette Syndrome/ADHD/degenerative discs/sleep disorder/anxiety/depression; in addition he’s had 3 back surgeries, & scar tissue has damaged the nerves to his bladder. Our prescribed opioids are a life altering, life saving gift. And yet we live fear that we’ll be cut off soon, as we battle more & more restrictions levied by our insurance company. Our doctor is being hassled for prescribing these meds, even though our issues are well documented by various tests. We women suffer from migraines also. One time I couldn’t get relief from my headache meds & went to the hospital in intense pain. The first question they had for me was “have you been here before?”. In my innocence I replied “yes”, & told them when. They acted very surprised to find out my previous visit was for a UTI. I had never been to any hospital asking for pain meds. Yet their first assumption, for some reason, was that I was there for drugs! Suffice it to say, the doctor looked kind of sheepish, but I was too sick to worry about it.
I am currently fighting to get social security disability for my daughter – she was just denied by an administrative law judge. Many nights I listen to her moaning and weeping in pain as she tries to sleep. It kills me to listen, impotent to help. How can we make people understand – people who don’t suffer as we do? I don’t know, but I pray everyday for pain relief not linked to addiction. I plan to try hemp oil next. But that takes money we don’t have right now.
God bless all of us who have to suffer both pain and the stigma of needing opioid pain relief. We shall overcome some day, somehow.

Linda Schneeman

I have the same feelings and fears. I’ve been called a junkie by one doctor and scrutinized by several. My current doctor took pain meds from me while lying until he got an mri that showed the damage to my spine. He then said he was sorry for not believing me. I feel any day he will stop prescribing the pain pills that allow me to have a life. I work, volunteer, teach Sunday school and garden. At 68 I don’t want to be an invalid laying in bed.

Heather

Yes. Thank you. These are my thoughts lately, these are my fears and frustrations. I don’t know what the future will be like for me. I downplay my pain… If I get a new pain, I want it to go away so that I don’t get to the point where I might have to bring it up to the doctor.

Is this really OK? Is this what doctors want, even? I’m the patient who can’t talk to you because if I say the wrong thing, if you don’t believe me, then I lose access to the medication that allows me to work and sleep.

I’ve sat through chest pains, hoping they’d pass. Thankfully they did. I was just sitting and waiting for a subway car to come. It wasn’t anxiety. It was probably a muscle spasm. It has happened a few times. I’m always OK by the time it ends. I haven’t told doctors. I don’t have a family history. I listen to myself list why it’s unlikely the pain is something to worry about, and I think, “I’m my own doctor.”

Our healthcare system is sick. Things are so wrong. Doctors know it, too. I’m sure they have to know it. The patient sitting in the exam room with the doctor is a person, with a life that is impacted by their symptoms. We aren’t a chart. When we leave your office, we don’t cease to exist. Your decisions have consequences for us. I’m sorry for doctors who want to do their jobs and can’t… but they need to fight back and speak out.

Wanda

I also have chronic back pain. I am 85 yrs old and don’t understand the big deal about MY getting addicted. I have been taking since 2002 and I know I’m addicted but what else is there.last time I told my dr. I needed stronger or more to obtain a good life she did raise the daily limit but jokingly asked if I was selling them. I keep them locked up and dispense my daily meds every week in one of those plastic containers that are divided up in hourly and daily compartments. That way I always know if I have taken the right meds on right day and precise time. They say I’m old and get forgetful so that takes care of that. Actually at 85 I don’t care about addiction as after all these years I have never overdosed or tried to dr. Shop in order to get more. Also after all these years I still have not felt the hi that they talk about. Thanks for letting me VENT, not everyone understands.

Mary

“We live one pain pill at a time” is a true statement.
And we live with uncertainty of a severe acute breakthrough pain “attack” which makes nature’s childbirth (including transition part of being in labor) seem like a Girl Scout 5 mile hike.
We – who are the patients living with significant injury and uncertainty of its acute “breakthrough pain” – well, now we live in terror. And as you wrote, the fear being an injured patient who has been through radiology tests, physical exams and fusion surgery to “correct” the source of our severe pain. When legitimate injury is called into question despite our modern EHR technology (Electronic Health Records) and such HIPAA personal information is disregarded, there is real terror of having untreated (or undertreated pain) if an acute pain episode occurs. Despite bringing a DVD copy of your MRI and radiologist’s diagnosis of your injury. Or some other diagnostic physician’s report.
Yesterday I suffered a severe cervicogenic headache. I awoke with a headache that began as one sided wondering if it was migraine. As I showered, got dressed and went to my acupuncture appointment the headache’s pulsating intensity worsened at the base of my skull (the occipital area both sides). My cervicogenic pain is resul of a severe whiplash injury involving a settled personal injury claim and a workman’s compensation claim more than two decades ago.
Classic Migraine is one sided, so the throbbing at both sided . I was out of my Rx Sumatriptan vials. So, acupuncture was going to be a “test” of treating my severe pain; will it disappear and stay gone? Before taking my prescription “breakthrough” medication, I would undergo a treatment.
It was peaceful and healing. I left my physician’s office not hurting. But four hours later, severe Pain returned. I finally fell asleep for about five hours after taking my breakthrough Rx.
My acupuncture involves Traditional Chinese Medicine’s energy meridians, and disposable needles inserted in specific areas. Treatments bring me back into a healthy balance, increase my energy(Chi), and reduce acute pain symptoms. Acupuncture treatments have involved blood circulation meridians. One specific meridian that always hurts me during aura, the storm of the migraine’s pain (can last for hours or days), after a migraine pain subsides is located between index finger and thumb.

Teresa Ivey

Oh, I love you for putting my thoughts, and fears, into words!!

Aww, your life, trials & worries almost parallel mine. I contracted a childhood disease which left me crippled (dislike this word) but managed to live a productive life until age, fractures, arthritis & Post Polio reared it’s ugly head. To continue living a somewhat normal pain free life I started taking opioids 10 yrs ago with no complications. Now with this opioid crisis I’ve been reduced to a life of fear, pain & exhaustion. So tired of this life, being questioned & scrutinized, now receiving terrible & shotty medical care, exsisting in a life of both physical, emotional anguish. I would love to have your determination to carry on, see some brightness during this dismal unfair opioid crisis war.

Karleah

This is probably the truest thing I’ve ever read.

Liza Zoellick, Ty for your insight and sharing your experiences, much of which is the same as mine theses days – People who live with medical issues that leave them to live in Chronic Pain are NOT criminals!

Virginia

Yes indeed, my Spooner friend! Give me a day in court, and I shall present my case, and most notably win!
The term “do no harm”, must do terrible harm to those doctors who truly want to help, but are held under the strict guidelines of these new CDC and other alphabet agencies’ rules now implemented.
I think we put too much emphasis of our rage on some of our doctors for their lack of dispensing our opioids for the reason of them thinking we are junkies, when many times it is actually the fear factor which causes doctors to not give them out. They are just repeating what they’ve been told by the beauracracy.
But, yes there are some who are prone to call and believe we are said,”junkies” and out to get our “fix”, I know. I found it is easier just to doctor shop until I find one who understands. Here in my state, there are hundreds.
I just really like your writings! You put into words exactly what happens to me on a daily basis. God bless you, sweety, and thank you for giving us a part of you.

Sheldon

I feel the same struggle and stress of the unknown. Is this the month that for the lack of knowledge or something I can’t control that I have no medication. How do you tell your kids you did all you could for as long as you could and now that your last result has been taken so has there father. Just the stress alone of the unknown triggers so many other health problems and increasing pain is one for me. As far as taking a drug, I feel if the benefits outweigh the risks then you need the drug and should definitely consider it. Chronic pain is no different than other illnesses that require meds to keep you from suffering or better yet ALIVE! A Cancer patient ways there risk to benefit when they do chemotherapy or take other meds that do damage to them. It is and should always be a patient and doctor decision on what meds and treatment is best for each INDIVIDUAL

Karl Zaremba

Another well stated ode to pain treatment in the USA 2018. I have to say that so far I am one of the lucky ones with a very caring and understanding group of pain physician’s. Having said that it is clear that they are under tremendous pressure also. Treating us with compassion and meeting the guidelines is a balancing act. To any Pain Specialists who may be reading this, Thank You for All You Do.