Untreated Chronic Pain can Kill! 

Untreated Chronic Pain can Kill! 

By Suzanne Stewart.

There are many articles that discuss this topic but I’m writing from the chronic pain patients’ perspective. Most things that are written are authored by Dr’s and others in the medical profession.  But for me and for us this is real! Sudden cardiac death is a frightening topic to discuss. This is true especially because many chronic pain patients live with the risk factors that are written about in the articles and medical journals etc. Personally, I have a pacemaker for not only Dysautonomia & POTS, but for an Arrythmia called “Sick Sinus Syndrome”! Additionally, I live with atrial fibrillation, MVP & TVP (mitral valve & tricuspid valve prolapse), CAD (coronary artery disease) & long QT syndrome! In 2005, I had a heart attack and in 2006, a CVA or stroke. Enough about me, but I’m trying to paint the picture that I am not alone in this. Many chronic pain patients have several comorbidity’s. If the CDC continues with this crazy “war on opioids”; taking our pain medications down to dangerously low  & restricted levels, people will die! I may die as well, and I’m not being dramatic!

Suzanne Stewart

So many people, including our clueless government representatives do not realize that severe untreated chronic pain can lead to death. They think it is just an innocuous “pain in the behind” for those that live with it. It doesn’t interfere with their lives or the lives of the CDC, FDA and several others such as, Big Pharma and the many physician run drug treatment centers in the USA. But when suddenly, chronic pain “hits” one of their family members, then they start advocating more. But why do they have to wait until it happens to their family members or even themselves? Why can’t they listen to our cries of suffering now, before more of my friends die suddenly from the agony of living with the daily unrelenting chronic pain without any reprieve? Does the government or the general public even realize that Veterinarians get about five times more education hours than medical students get for human beings living with chronic pain? I read that there was a study done in 2011, and the Journal of Pain found that the United States medical programs only allot approximately 5 hours of teaching time on the management of chronic pain. Our Canadian neighbors give their medical students a whopping 19 1/2 hours! This is where the medical professionals who educate the incoming physicians are at fault for their part in this “crisis” as it has been called.

Just this past week, the pain community, including the support groups that I administrate online, lost another chronic pain warrior. I lost my 7th friend in just over 2 years! This is the 3rd friend that I have lost to chronic pain and patients diminished access to pain medications. In my experience, it continues to be the same story; in that the chronic pain patient tells their significant other or family members that they are feeling worse. They go to bed to try and relieve their pain and they never awaken. My friends husband found her slumped over in her chair, late at night when he checked on her. It’s not unusual for most pain patients to stay up very late watching T.V. or “playing” online to keep our minds off of the pain for awhile. When the coroners do an autopsy on a person who has died suddenly, and they find “drugs” in the bodily fluids; they blame the opioids. These are educated people, toxicologists an forensic medicine physicians. They seem to just blindly blame these deaths on the opioids instead of seeing the possibilities that exist. It could have been death from pain that was unrelenting and untreated and/or misdiagnosed and under treated. Maybe more of my friends died from the sudden drop in their pain medications?

What is it going to take to get the government to listen to our pleas? I’ve written and sent the same letter to the White House  twice and have gotten no response. I’ve made videos on YouTube to explain this crisis in Chronic pain community. I was hoping for at least one of them to go viral. But instead, the viral videos are about usually someone falling off of a chair or a baby biting his brothers finger! How do we get them to listen to us? I agree with the fact that Opioids should not be the first option for people with chronic pain. I also agree with the research that’s being done on medications that cannot be crushed or melted to become more potent for those that do abuse them. But for those patients who have been on a “normal amount” and steady dosage of Opioids for a long period of time; why not leave them to the physician(s) that know them? Let the Doctors who’ve treated them for many years, take care of their patients without fear of Federal agents breaking into their clinic during hours and scaring everyone half to death! If someone has been taking opioids for a long time and the dosage remains the same and it’s working for them, can we not leave them alone? Let them live some semblance of a life outside of their bedroom or recliner. When I say “them”, I mean “us” and we are dependent but not addicted to these medications. These are not “powerful, strong meds that loop us out of our minds” as I’ve heard on several occasions. These are the medications that we need, in order to have a small amount of active time during the days. We aren’t asking for more and we agree to the submissiveness and feeling of personal character attacks with urine drug screening. We sign the contract with our pain management physicians. So why not just let us live our lives and stop attacking us and calling people who live with chronic pain, “drug addicts”. 

Anyone who calls people living with daily struggles of unrelenting pain, “addicted”; needs to learn more and be educated about opioid use with chronic pain patients who have several high pain illnesses. Not only do they need to learn more, but they need to be empathetic and try to put themselves in the pain patients place for a moment or two. People, especially those in positions of power; need to think about what their lives would be like if they could barely get out of bed in the mornings. What if they couldn’t go to their fancy dinners or dances, due to chronic pain and unrelenting fatigue? I’d say they wouldn’t like it very much and neither do we! How do we get these officials to learn the difference between the words “addiction” and “dependence” before more of my friends die from under treated pain or lack of any treatment?

Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor.  She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S. Pain Foundation. 

For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth (Suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

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Lori Joksch

This store and many others including mine own with CRPS full body are so heart breaking. Work Comp did same thing to me. Walked into regularly scheduled appt with well documented history of chronic pain. Did everything I was told so I could keep working including putting in two very painful SCS . That only helped 1.5 years. Come to find out that was expected at that time but they didn’t tell me. I was pulled off opiate with no notice and no other alternatives for severe pain. I was terrified . Thank God I found Ketamine IV and another Dr who would prescribe opiates. This is horrible how we have been treated. As a professional nurse retired it makes me very angry.


On October 11th, 2017, I broadcasted the following letter to the CDC, Ohio Pharmacy Board and members, the Governor, and 12 others holding great power over pain & suffering, Life & death… To this day, I have received one reply from the CDC telling me about the “guidelines”… I have sent others, but here was my original letter: To ALL Whom I Pray it SHOULD Concern: You will (please) forgive the fragmented nature of this communication, as my once adequate cognitive prowess has descended into PAIN driven, sleep deprived “madness”, confusion and desperation. I will endeavor to be brief as I fear my “murder” is imminent: My name is Jeff and I am a 50 year old male being HELD HOSTAGE in a “TORTURE CHAMBER OF A DYING BODY”, assisted by the legislators, “enforcers” and the “Health Care-less” doctors and insurance companies responsible for swinging the sharp and deadly “opioid pendulum” to the extreme of cruelty. This is my last and final cry and prayer for help… Up until December 2001, I had been a very happy, very healthy (weighing 175 pounds at six-feet tall), very hard working and successful professional, in love with an Angel of a woman, and father to the most beautiful and amazing daughter on planet Earth who will turn (edited) of 2017… Beginning in 2002 to this moment, I have been a (very well documented) long-term chronic pain patient. After suffering a life threatening episode of acute pancreatitis at the end of 2003, I was subsequently and finally diagnosed with Pancreatic Divisum (“the pancreatic ducts the size of a 3 year old”) – a birth defect that apparently caused Acute & Chronic Pancreatitis. To compound my pain exponentially, in June of 2016, I suffered a compression fracture of my thoracic spine at T-8. I have lived in non-stop, unrelenting, varying degrees of pain 86,400 times per day, every day since 2002… Over time, I have been further diagnosed with Degenerative Disc Disease, Osteopenia and a form of Spinal Arthritis, Malabsorption/Malnourishment, among other documented medical issues and diagnosis’s. Now, I have dropped to as low as 104 pounds and have reached “murderous” pain levels in my abdomen and thoracic spine as any pain medications have been increasingly withheld… https://www.nbcnews.com/storyline/americas-heroin-epidemic/chronic-pain-sufferer s-are-scared-ohio-s-new-opioid-rules-n742951 An excerpt from above link dated April 6, 2017: “We have tried to make it as clear as possible that this is not aimed at chronic pain sufferers,” said Cameron McNamee at Ohio’s state Board of Pharmacy…A guide put out by Kasich’s administration clearly states that “the limits only apply to the treatment of acute pain.” McNamee said. “I can tell you with 100 percent certainty that the rules proposed by the governor are not aimed at persons who suffer from chronic pain. Those individuals will still be able to get their appropriate medications.” Well, I can tell you with 100% certainty that these statements were wrong, dead wrong. (edited) These Ohio “rules”, along with the CDC “guidelines” have had the effect of ABSOLUTE LAW. I… Read more »

Kathy C

I watched a CSPAN presentation on the “Opiate Epidemic” last night. They allowed people to call in with their comments. They allowed people who have dealt with deaths in their families, due to the “Opiate Epidemic” to call in and tell their story. There were a fww callers who were Chronic Pain patients, each time they called in they were cut off and the number of dead was repeated. They allowed people with their thoughts and no experience to talk at length. We are lucky we were represented at all.
One repeated theme, they refused to acknowledge was the fact than any of the dead had been through treatment. The fact that something is not working, is not gettign mentioned either. The “Discussion” was pretty pathetic, because they expect the President to Declare a State of Emergency, another meaningless political move. They still refuse to look at Facts, or even discuss them.

Rhia Steele

I’ve been saying this for years!!!! Chronic Pain left untreated can result in DEATH!!! For all kinds of reasons. Like the author said many of us have “comorbities” like heart problems, and myself several autoimmune illnesses that put me at a higher risk for “early death”. But, you take away what helps me NOT have to deal with severe pain, and my body would probably “shut down”… NOT from NOT TAKING THE MEDICATIONS! BUT. from the HORRIBLE STRESS TO THE BODY OF CHRONIC PAIN DAILY! I posted this article on my Facebook, on Twitter, I am going to post it on my blog, and everywhere I can. I’ve been trying to get the word out that THEY ONLY TELL ONE SIDE OF THE STORY ON THE NEWS AND SUCH! YOU never HEAR ABOUT US, THOSE THAT WOULD POSSIBLY PASS AWAY FROM STRESSES OF SEVERE CHRONIC PAIN.

J. Dempsey

I am going through the same thing as what other patients are describing above , New York State Special Funds , the insurance carrier for The Workers Compensation Board has declared war on anybody who takes opioid meds for chronic pain , treating me like a junkie despite having been prescribed them on and off for 30 years . I got hurt on the job when I was 30 years old , it was a herniated disc at L-4 L-5 . After trying conservative methods like P/T and other excersizes , one year later , I opted for a laminectomy so I could go back to working without restrictions on lifting or any other physical activity . It was successful and I returned to work 6 weeks later . I had worked for the better part of a year while injured and was prescribed Percocet , which is now called oxycodone , the demon drug to relieve sharp pain while I continued to work , After recovering from surgery , I no longer needed the Percocet , but my surgeon said that to stop taking it abruptly could cause discomfort , so he prescribed some valium for a couple of weeks as I slowly weaned off Percocet . Long story short , I had another surgery 6 years later in 1998 to remove some disc tissue that had fragmented , and again returned to work successfully , Experiencing sharp pains shooting down my left hip and into my left leg almost 10 years later , I was told that only a spinal fusion could help me , After the very invasive fusion surgery , the neurosurgeon informed me that I had a broken back where one of the screws used to secure titanium wire to my low back had cracked a vertabrae , but I was told that it was not a major problem and it would heal . Over the past 10 years , I have gone from bad to worse on a pain scale with no other alternative than P/T and medication . I complied with every thing Workers Comp asked for and only wanted to return to work . Now I am being told that the opiod medication I have been taking just to be able to walk on my own is being taken away and was told that I should go to a 60 day inpatient rehab so they could discontinue paying for the medication , I am now 60 years old and being treated like a junky even by the pharmacy I have been going to for 10 years. Denying people like me with no drug arrests or history of abusing pain medication is a crime . Most people who are prescribed these types of meds are the least likely to crush , smoke or inject these medications , however we are the ones paying the price for some dopey kid washing down Grandma’s pain meds with vodka and dropping dead . Keep up the… Read more »

Tim Mason

Rich, that would be hydrocodone and considered a lightweight opioid. I find it quite strange that they would just stop rather than give options. Did they happen to offer alternative or complementary treatments like physical therapy or massage and you declined?
I think trying one of their alternative treatments in conjunction with drug therapy shows that someone is willing to do a little more to help themselves.
Doing these things also looks good if you ever have to complete a medical resume for social security disability benefits.

Rick Kelly

Can I ask a common sense question of our community of refractory pain sufferers pls for the experts out there?

What difference does it make if one is ‘addicted’ to Opie vs. ‘dependent’ when your talking severely atrophied limbs and 24/7 broken arms and legs type of pain, which should be easy for a Dr. In power?

Taking my INSULIN (opies ) away is going to ‘improve’ my health when there are NO proven treatments available?

Pls educate this Colorado public schools product.


I fell like I am a part of each one of ur stories and I am so scared that in a few months I too will b in a really bad place if my pain meds are stopped. I was diagnosed with lupus 20 some years ago and had breast cancer 9 yrs ago, 3 different types of chemotherapy followed by 2 lumpectomies and then radiation. I was on herceptin for a year after the chemo and I’m sure it has something to do with the chronic pain and just a few weeks ago I was told I have PBC which means the lupus is attacking my liver aggressively . At the beginning of my lupus diagnosis, I was put on steroids and gained 50 lbs and hated what I looked like and the depression got worse. My best friends wedding that we dreamed of for years and I didn’t want to b in it b cox of how terrible I looked and felt about myself. I was put on depression meds and it was a process finding the right ones. I was a hard working very active fit person before this and I would try to explain how bad I felt but people would say well u look good and think u can’t b in that much pain but I was. I used to take ibuprofen like they were candy just to get thru to the next 4 hours. I felt like Dorothy in the wizard of oz when she was running thru the field of flowers and she said I just need to sleep for a bit then I will b ok( don’t quote me on that but u get the picture .) it was this medicine and that medicine and my life turned upside down I don’t no how I raised to great kids and stayed married for 35 years but fast forward to today and I am working again and planting and gardening and painting and just getting out of bed is a huge deal! But at the beginning of June r ins changed and I’ve been on vicoprofen and Tramadol for the past 5 yrs and every time I go to the pop I feel like an addict and they ask me where my pain is and I say it really depends on the day and how active I am and anyone with lupus and chronic fatigue nos no one hurts the same. But getting back to the ins change, I am taking Tramadol 300 mg ER daily and the new ins kept rejecting it b cox the girl at the docs office kept putting AS NEEDED on the auth and it was supposed to say DAILY and we had to buy a pill everyday for 10 dollars at the pharmacy b cox they couldn’t fix the wording. We get about 600 dollars taken out a month for medical ins and what was 15 dollars a month was costing us 140 dollars total of each… Read more »


I suggest that many of these comments be copied and pasted by their authors on the Facebook pages of Tucker carlson,, Brett baier, Martha mcCallum, Fox News, the five, fox and friends….these are all hosts on Fox News, they all have Facebook pages. And fox has been doing daily segments about the “opioid crisis”. I keep posting on their pages but would be powerful if they had many comments coming in. I keep telling the host they need to cover the other side of the story. I told them there is a huge story here, for whatever network or reporter wants to pick it up. We just have to plug into the right person.


I hope these great comments are being submitted to the “powers that be”. Unfortunately, it doesn’t help us to tell each other these things (except the great support we get from them). They must be submitted over and over, continuously, to the government agencies and power brokers. I hear there’s a website called “classaction.com”….it’s time for a lawsuit. If there’s any way I can help on computer, someone please email me.

Tim Mason

Actually what is needed is an official organ of communication to refute the inaccurate articles quickly and to the employers of the author. They should be refuted and backed up with peer reviewed articles by medical professionals.
Anyone can be a reporter. Just know that most of these kids writing these articles have no medical or scientific background. Many that cannot make it in mainstream university math and science classes choose journalism.

Charles Lucas

He has done all that. He is considered an interventional pain management doctor and has gotten away from opioid prescribing because he is afraid of “going to jail”.
He now focuses on injections, nerve ablation, pain pumps, implanted simulators, etc.


Suzanne, thank you for your response. I apologize for misreading the article. I suspect it was a case of cognitive fog. I’ve been pushing myself lately without a truly sustainable rhythm in my life. Again, many thanks. I am also very sorry that your heart is hurting over what’s happened. I feel for you and communicated poorly in my first message. It has to be hard to see it hit so close to home… and many times over. Part of my own mind is in denial because of the fear of it happening to myself. Frankly, I’m terrified.

I’ve been confronting my own grief process (denial included) over my health issues lately — it’s a reminder that as long as I live, I will probably never be completely out of reach of grief over how life has changed. I’ve vented openly to a neighbor about uncomfortable testing that I’m going to be subjected to, so that I can “prove” that I have asthma which I’ve had since birth. I guess it’s sobering that people who have trouble breathing may be dis-believed. They’re going to set off my asthma with methacholine and then put a tube down my nose into my throat so they can visualize what’s happening when I can’t breathe. Patients have no credibility any more.

In the midst of other things, I vented to that neighbor twice and then kicked myself about it later. He couldn’t understand… but he tries. He says things he doesn’t know will sting, as many friends have. I’ve told myself I need to keep more things to myself when it comes to health issues. I think my medicine makes me chatty and I’ve always valued openness, authenticity and honesty anyhow. It comes back to bite me more often than not.

I’m thankful for people here, who understand, as I post mostly anonymously. I haven’t lost anyone to chronic pain yet, but I’m literally shaking… it’s hard to think about. My mother is far more debilitated than I am from her aggressive arthritis and spinal issues. We live in very scary times.

Tim Mason

“My pain management doctor” ” he gave me a few names of doctor’s who may still prescribe”
These comments make me wonder if this is really a pain management doctor or just a doctor that is prescribing schedule II pain medication because he offered names of doctors that “still may prescribe”
Real pain management doctors recognize pain causing disease and prescribe accordingly up the and some over the guidelines.
Pain management doctors look for images, documentation, willingness to try alternative medications before working up to heavy duty schedule ll formulations.
These doctors have to prove that they started a new patient off at the bottom of the prescribing tier. Insurance and SS require this.
Also, many people go in smelling like an ashtray which is construed as having an addiction problem.
It may take you a year to get where you need to be but you will be getting some relief along the way and proving you can handle the plan. Bring those images with you and any previous doctors notes.


Thank you Suzanne. As always your article is right on point and some of us would be so lost without your writings . We hear you and know you hear us. Please keep fighting for us all.


Thank you for this article. I fell out of an elevator working as an RN, while going to an inservice. I had 2 thoracic surgeries called costotransversectomy. Two different surgical levels and on opposite sides. And being thoracic they need to saw part of your rib out in this barbaric lol surgery. I had a disc that was a mm away from severing my cord and paralyzing me for life. This was over 20 yrs ago. We made the untimely decission to move to a new area in 2016 just when all this [edit] started. I have paralyzed accessory respiratory muscles paralyzed and excrutiating unrelenting pain on my entire right side front and back my entire right sided torso feels like a million toothaches. The kind you’d do whatever you could to find an emergency dentist in the middle of the night. It also spreads down to my hip and groin. My other surgery was on my left a couple levels apart. On my left side it hurts in my back at the thoracic level and wraps aroung gripping my chest. I’ve been on pain management for over twenty years being very responsible with no problem. I had to stop cold in my tracks sometimes but mostly it was at least bearable level and had some quality to my life. I was taking 60mg mscontin q12 hrs and oxycodone 5 mg prn. Okay we move and I need to find a new doc. He drops me drastically to just 3 vicodin a day 5/325!!!!! You folks who are afraid of withdrawal being deadly. Well I *WITHDRAWAL IS DEADLY. I NEARLY DIED 4 TIMES IN ER WITH THIS DRASTIC DRUG CUTTING WE ARE FORCED TO DEAL WITH. I have personal proof! I ended up in the ER 4 times confused, combative, dangerously low potassium and heart rate in 160’s. I vomitted all over the nurses not even aware I had done that. I mean I was on 140mg of ms equivalent daily and overnight dropped to 15mg!!! That’s insane. My husband is thinking of suing the Dr whom did this. He says 3 out of those times he thought it was the end. I was so confused I didn’t even recognize my husband. Ok now fast forward to seeing a new pain doc. ( the prev drastic drop was my pcp) A cpl of the ER docs were empathetic. I was rushed to the ER in bad shape and confused. I did not go seeking drugs. But now my new pain doc thinks that. It is absurd that we are treated this way. I was told NO NARCOTICS!!!!!. I’m worse than I’ve been in over 2 decades. Excrutiating pain. I asked at least for ambien so i could at least sleep at night I was told no. I begged for something and they give me Vistaril. Well thanks for the comassion docs from one health care professional to another. I worked in CCU and PACU_recovery room) if i was going to… Read more »

Jessica Agee

Thanks Suzanne , I see so many of my friends post about this epidemic and it’s always about helping the addict and how prescription opioids started it. As much as I want addicts to receive quality treatment & rather than being jailed go directly to treatment. I’d like to see more people have access to mental health. That really needs to be to focus. Nope its put on people with chronic pain of many kinds. It’s so sad that so many of us have to suffer & die from suicide or the horrible pain. We did not ask to be in this pain & I can tell you most of us went through so many hoops before getting pain medication. I didn’t take pills at all before chronic pain , I hated it, but my pain just was getting worse and worse over the past 10 year’s. Mine started by a few herniated disk in my neck C5-C7 and I was only like 27 when the pain started and I just couldn’t take it and I was young and said I didn’t want to live on pain medication or the pain I was feeling so I had a spinal fusion of the cervical spine June 2007. My worst decision of my life because a nerve got cut and set me to the world of chronic pain for the rest of my life. I had doctors/er treat me like crap, I’ve lost friends over the year’s. I didn’t choose this, I want my old self back more than they could imagine. I’m in constant unrelenting pain every single day of my life. I have chronic pain, nerve damage , arthritis , osteoarthritis , fibromyalgia , ddd , 2 new herniated disk, insomnia , fatigue , ibs, & no energy ever. I don’t get to do hardly anything without paying for it. I did not ask for this! Last year in April 2016 the day of my birthday my doctor calls me in for random pill counts ( meaning that I signed a contract & have to come in for an un- scheduled visit to my doctor or no pain medication) & he counted that & did a UA that was sent to the lab & passed ALL TEST! Still he told me I’d be taken of my Oxycodone 10mg. ×4 a day & be put on 60mg. of Morphine Sulfate ER capsules once a day. To some that might sound okay , but they 1st of all like my friend pharmacist Steve said even though it a ME to what I was on before , I’d be only getting 8-12hrs of pain relief. He’s right! Not only do I get about 8hours or less of pain relief it’s not much relief at all. They try to make it to where addicts can’t crush or inject them & in the long run it makes to where it doesn’t help a lot of us chronic pain patients. I’ve herd many , many people… Read more »


Sending suicide notes to politicians or anyone else makes chronic pain patients look like drug addicts that can’t live without the drugs. It will make it harder on chronic pain patients. Haven’t you heard from others that have done this and either had law enforcement make a wellness check on them at their home or they are sent information on drug and other mental health programs in their area?

The new law passed in New Jersey is only for opiate prescriptions prescribed for acute pain. It does not affect opiates prescribed for chronic pain. You need to read the actual law Governor Christie signed.

If/when a doctor leaves practice or decides to no longer prescribe opiates to a patient or decreases opiates, the patient can look for another doctor. If the patient broke their pain contract and can’t find a doctor or they won’t accept a lower dose of opiates than what they were on, that is their decision and their choice.


Suzanne, your article brought tears to my eyes. My sister who suffered with OA her whole life, multiple surgeries was under treated for pain. I know this because I too have severe OA. Two years ago she laid down for a nap and never woke. Cardiac arrest. She did have a pace maker but it had been tested the day prior. HJ I understand you think there should be a specific reason for a death like this and there is. The stress of living in pain for years takes a toll on a body. I worry my fate will be the same. And unlike my sister I have had a heart attack. It’s all so sad. Also Rich, please hang on. Search for a better doctor. They do exist. Keep fighting!!

Kim Miller

Suzanne, I am so sorry to hear about your friends’s passing. It’s a cruel world for chronic pain patients, especially these days when the minimum amount of opioid medication appears to be too much. Too much for anti-opioid zealots, the CDC and FDA, and those producing hype in the media about the “Opioid Epidemic” that’s driven mainly by opioids not available by prescription. Still, cutting back on prescription medications is the popular tactic of those in charge of our lives, despite the fact that street manufactured opioids and/or heroin are responsible for the vast majority of opioid overdoses.

Every visit to the pain doctor is packed with fear that the office will close down or my medications will be cut back or taken away. This is no way to live.


Timely post as I was just denied narcos after being on for 6 yrs and NO breach of contract. So he said I had psych issues w/o input from my psychiatrist.

I have full body CRPS RSD CCC variant. Basically all my limbs have atrophied and refractory pain 24/7.

I guess I need ideas on ‘what’s next!’ Withdrawals may kill me. Not being a drama king.

Does anyone have ideas for me? Lord, somebody help me.


Thank you Suzanne for this article. I, suffer myself with chronic pain. My ex husband, in 2002 beat me up severely, leaving me with 5 unsuccessful surgeries. I have tried chiropractic care, acu puncture, tens unit, and shots. I have been in pain management for years since all my other options had been used. Everyday I worry that for some reason the DEA will find some reason to shut my clinic down and leave us patients helpless. I hurt so bad but the way things are going I asked my Dr. about being put on Suboxon, however, I take medications that help my depression and anxiety so it would be to dangerous for me to take. My Dr. also said I wasn’t a candidate anyways.
I have also written letters to President Trump and my Senators but no response.

I wish we all could find a lawyer and all chip in to one lawyer that isn’t afraid to stand up for our rights.
This is ridiculous to treat anyone the way we are getting treated.


@ Suzanne I admire your commitment and your undaunted spirit for improving the lives of people in pain. You have inspired and supported many in pain to stand up and speak out for themselves and I know that you will continue to do so. Our system isn’t designed to listen to and work with people in pain. On the contrary, our government and health care industry wants us to listen to and obey them when it comes to pain care. And so this maybe the first hurdle to overcome in our system- a need to prove why we should be heard in the first place. I believe it is a mistake for people in pain to assume that people in government or healthcare have a normal degree of empathy or value the voice of people in pain. If government and the healthcare industry were to value the voice of people in pain -that would require them to change-and why should they change as they believe they know what they are doing and that people in pain dont know what they are doing if they see things differently than they do. Moreover change requires effort, time etc. This is consistent with conservation of resource theory-and no it not an environmental theory- its a sociological theory that people try to conserve their political, social, economic and time resources. And as you know don’t doctors and government claim they are pressed for time- with politicians saying they have thousands of issues to deal with and doctors indicating they have many issues to deal with as well. So people in pain and pain care advocates should consider the weight of the aforementioned when advocating for pain care. The doctor and the politician are put in positions where the presumption of their being correct is inherent by virtue of the authority invested in them. This is another hurdle to be overcome. People in pain, in my opinion, dont articulate “the big picture” or achieve higher moral ground. They need to advocate with not their own reality in mind- but understand the social political economic and moral dimensions of pain care. Ive noticed their comments are often too atheoretical and dont speak to the politicians and professionals as seeing themselves as intelligentsia. People in pain need to speak to the language of professionals and politicians. In addition, the comments arent often crisp and authentic enough. Good advocacy comes from a strong resolve and pure spirit. Advocacy requires knowing your “opponents” well- their strengths and weaknesses-and knowing yourself even better- strengths. and weaknesses. You will have to outclass, overpower or out maneuver your opponent. You need a guiding vision, moral imagination,motivational intensity and lots of time and effort to achieve victory for people in pain. Identify your weaknesses and unflinchingly work to improve them because its your weaknesses and mistakes that can cost you victories. And you should make a study of all the weaknesses government and professionals have when it comes to dealing with pain- and… Read more »

Kristen K

Thank you Suzanne for writting this Artical.I am a pain patient and have been for many years like all of us here i am afraid.Your artical is very much becoming a unfortunate reality.last week I went to my monthly appointment for refills like I have been doing for years only to find out CVS had made several calls to my Dr saying they are concerned that I am the perfect storm for an OD.Wow I have to say I wasn’t surprised considering all the guidelines that they would come up with some excuse to take away my meds but I keep asking myself why now! I have been on the same pain meds for 6 years that have helped me get through the day.My Dr who I think is excellent says to keep CVS and the FDA happy she would have to cut me from one of the pain meds.Like so many of us we need our meds to live somewhat of a normal life and this is becoming a nightmare that is a scary reality.I feel very angry about this but I was to afraid to defend myself knowing I still have the other two meds that I count on to help get through the day.I think CVS is a joke to wait 6 years to all of a sudden be concerned about an OD.I like most pain patients are responsible, we don’t take more than the dose we are prescribed.I am just thinking already of next month when I walk in again I can’t help but worry are the gonna pull another med from me! I am sorry to hear about your friend and I do enjoy reading your articals.I really wish the FDA and CVS etc would leave us alone and let us live.


I think we should start sending our “suicide notes” to congress, news stations etc. what would you write if it got to that point? Tell them they caused this. This is your warning, these are not actual suicide letters but do you want to wait until they are?


Until and unless Chronic Pain is listed as a Primary or Secondary cause of death, it won’t be considered. It is extremely rare for chronic pain to be a trigger, so to speak in the COD.

When an autopsy is done, blood levels are done to determine if drugs in the system were at a level that could cause death. If they are at a level that could cause death and there is no other evidence to indicate cause of death, the drugs are listed.

Hello, just me responding to more comments. This one is for Tim. I’d written this article several weeks ago. It was posted as they had space, which was today. I’m sorry I did not see your article. I did see the one from 2008 that you referenced. But that was 1/ years ago and this horrible predicament that we chronic pain patients are living in, needs to be repeated again and again, until someone listens to us! Also, my article is written from the view of a chronic pain patient . Keep the comments coming! Thank you! I love you guys! I also want to include Dr Isben, and Steve Ariana Pharm D; for helping chronic pain patients as well! They are our advocates too, so don’t anyone give up Hope!!

Hello, please let me respond first to HJ, by stating that in my article I explain very clearly what has happened to several of my friends who’ve passed away in the past 2 years or so. I stated that they had been under treated and lost their medications for pain. They had all been long time pain patients with several co-morbidities. They each had their pain meds stripped away for one reason or another. Either their Drs left or the practice shut down. Some of them, their Dr’s became fearful and stopped prescribing all opioids! That is how they died and definitely not from taking too much medication! They were miserable after being dropped and they got sicker and in more pain. So that responds to your question. Also CHARLES, please don’t feel hopeless! The reason I wrote this article was not to make people feel worse or hopeless; but to give you and others HOPE! To know that there are advocates like me and many others, out there or out here fighting for you and for ourselves daily! I’m not giving up any time soon. I have another friend and he and I have an Opportunity to go on TV and tell “the other side of the opioid crisis”! We are going to be working on that and so promise to write about it soon after we do that!!!please don’t give up hope! You never know what’s around that corner! We have great people trying to help us, including this newspaper/Ed Coghlan, Dr Lynn Webster MD, Dr Terri Lewis PHD, and Dr Red Lawhern PHD, and me!!! This woman isn’t going down without a fight! Please everyone DO NOT GIVE IP!!! WE NEED YOUR HELP…if only for a note, an email or a letter! We need you and we won’t give up on you either!!!

Name Withheld for now

I’ve posted comments previously and I have spent hours fighting, writing, e-mailing anyone who would listen to the terrible line that has been crossed in the attack on Chronic Pain Patients in this war. I reached out to my State Legislature before New Jersey Law was signed, but I was repeatly assured that the Opoid Law Gov. Christy was signing would not impact our community. They lied and I was repeatly verbally told by media sources and my Assemblywoman for my New Jersey District that the Chronic Pain Patient Community was not to be targeted, or effected. So they all lied or were lied to. There is no other way to I can explain what they are doing to us. In my opinion, as a patient, a layperson advocate, we have been indicted, and convicted of a crime without Ia trial. It’s unjust, it’s immoral, disgusting and must be reversed. There is no one listening to me and I am acutely aware that all my efforts to bring some sense to this I feel have been in vain. I sense this appears to be the same stonewalling that all others who have written and told there personal and heartbreaking stories have encountered. Unless we get very high profile Doctors, Politicians, Celebrities, and the Press and The Mainstream Media to pick up our fight and put a face on the injustice that has been done and take a serious interest in our abuse by the Insurance Companies and the CDC, we will continue to be ignored. But when a decision like the CDC’s severely flawed recommendations are made in a vacuum of ignorance, misinformation and fear, the outcome is never ever going to be positive. This time, the CDC’s ignorance is a deadly and as we see, us hurting innocent sick, people. The CDC and their staff and officers launched an attack on the most vunderabje and those most unable to fight back. Their “guidelines” were written by a Doctor who is not a Pain Mgmt Doctor and has never treated a Chronic Pain Patient and had no background in Pain Patient Care. It’s despicable. We have been grouped together with the Heroin addicts and Illegal Opioids users and are persecuted. We have been caught up in a DRUG WAR and it’s criminal and disgusting and unethical. Those using illegally will continue to use and get their illegal drugs as there is always a way. We, who follow the rules, visit the doctors, subject our most private and repeatly must tell our intensely personal stories of pain and suffering, people who could care less. This fight must be brought into the PUBLIC NOW. Those in the Pain Community who have access must take our fight into the light now. If we don’t, we are destined to suffer and possibly die, either from attempting to use illegal drugs for relief, or depression and desperation and sadly, suicide. People, stop writing to each other and start calling every CNN, MSNBC, RADIO STATIONS, make… Read more »

Kahty C

The Hysteria that is being propagated by the Mass Media, is making this worse. The Associated Press came out with guidelines recently, too little too late in my opinion. In a Nation where people believe so much nonsense and Fake News, little is based on fact anymore. Apparently in 2013 the DSMV removed the distinction between Addiction and Dependence, which helped fuel the current mess. Not much was said about this “Mistake” in any Mass Media outlet.
I suspect it had to do with the A.C.A, and Psychologists seeking to increase their billable opportunities. Follow the Money is the most direct way to figure things out. They ran a Propaganda campaign with so much Hysteria. Lurid Headlines blaming “Addicts” for everything from Poverty, Crime and the GDP. On Cable TV there are several riveting well produced and entertaining Shows, on ‘Treatment.’ They consist of families with their difficult, Addicted Child, with dramatic “Interventions” and a “Therapist” or “Addiction Counselor.” These Dramas play out with all kinds of outrageous behavior, as they promote the “Addiction Industry.” They are edited and contrived in way to avoid questions. They leave out the facts, such as whether ‘Treatment” works. They have to return multiple times. Then there are the “Disease Models” the “Addicts’ are cursed, it is a lifelong illness, they are powerless against. that narrative is likely contributing to the Death Rate. These “Documentaries” are really Advertisements for the Treatment Industry including the Names of the Providers and Locations.
Combine the Newspaper Headlines, TV “News Sensationalization, and these “Edutainment” mixed with Advertisements, and we have a nation of Industry Advertising propelling Policy. They just leave out the pertinent Information, and people don’t even miss it. This has become a marketers dream. They made it OK if people die, because they are “Addicts” according to the Media. The Medical Industry is able to deny care to the ‘troublesome patients, and sell more intrusive, dangerous and expensive procedures, or avoid diagnosing a condition altogether. Pharma has a number of ineffective, dangerous and expensive “Alternatives” to peddle, and as long as they don’t count the dead, or the “Adverse Events” everyone can feel good about denying pain medications.
I am including the link to this Article about the AP Guidelines, everyone should read it.


The was they covered Carrie Fishers death was another contorted version fo the facts.


Excellent article that really took a lot of how I feel and put it on paper. The depression of having to live our lives this way adds to a percentage that is not even being added in and that is from suicide. Sadly for many of us, any changes might come too late. I was informed by my dr that the recommendation that most pain patients have to go through months of appts with a pain clinic is now what she has to do as well. So basically a dr that I have been going to for 7 years is not allowed to step up my pain meds when I need to which is now. I have to try to go to a pain clinic and it will take months and I was also told they will try every thing else first. A person loses hope when they are told things like this.


Well said, Suzanne. An accurate narrative for people that “live” in pain. The world of continuous pain, is not conceivable, “realized”, by people without it. Have you ever seen someone “hurt” in a minor accident. An accident that maybe was seen as visually funny? Some people laugh at the victim of minor accident before the realization that the victim is actually injured. I “liken” this mindset to the people who are blessed to have no “chronic” pain, for now.as the folks that laugh at injury. If continuous pain develops in a close family member, a parent, brother, sister, a close friend,a child, then the condition gets real serious. We do not wish to see a loved one suffering with continuous pain. It alters life…..as we once knew it. It can happen to anyone, and any family member or friend. When diagnosed with a pain generating condition, “protocol”, the attempt to diagnose the underlying condition that is causing pain, is, and has been taken by the “chronic” pain patient. IF effective treatment. without opiate medication, is available, then that is the next step. If the health condition. generating everlasting pain is not “curable” , then the the best, least, medication to ease pain is prescribed. We, the pain patient, has been through the protocol. When and if a non opiate medication does not sufficiently ease pain, then an opiate based medication should be prescribed. It works. Unfortunately, with the passage of time, the same dose or same medication does in fact, lose effectiveness. Patients are different in their needs for type and dose of medication. The physician is the assessor.as to address the patients needs. I believe that a plateau, in opiate medication that relieves pain adequately, for years, decades, can be achieved. A level of pain that can be tolerated without literally suffering.. I am a living example. An 80% reduction in medication, any way you asses it with 90mme daily, has caused radical ,unsubstantiated, negative change in my personal and families lives. Again, unfortunately, those with a impressive education and, “:experience” in medicine, have determined that the plateau of medication has been established, through “research”, and a “guideline”. An opiate “conversion chart” that has been established, for one and all regardless, of ANY variable with the health condition, in the individual patient. Does patient “testimony” count? Patients that have been beneficially prescribed with past prescribing “guidelines’. I think not. 90mme daily, is not meeting adequate pain relief with even “new” patients. People that will have pain for the rest of their lives..Pain is subjective, to the one that is living with it. The professionals that do not have continuous pain, can not, do not, and apparently will not accept the patients testimony that their individual needs are not being met. Even within decades of beneficial use, without subsequent harm to the overall health of a patient. I have wrote, Dept. of Health and Human Resources because we have no other “resource” to effectively temper continuous pain. Contact with CDC,… Read more »


Suzanne, excellent, thought-provoking piece. I wish that those who are so actively persuing this problem would read your piece & lay off the scare tactics.
I’m so glad you’re on our side.


Suzanne. Agree totally. I had to go a period without my meds when my PM group decided they will no longer prescribe Rx for narcotics. I could not do my daily walking resulting in higher bp, and high blood sugar levels, even though I continued to take my diabetic, bp, and heart disease meds. I still attempted my walks but could barely make the half a block. I was not able to attend granchildren’s bd parties or take my usual “me” time at.my brother’s property, where there is two fishing ponds and a camp and woodshop. I could not even play my guitar. This all resulted in depression, agitation, hopelessness. My primary physician (internal medicine) came to the rescue and put me back on my meds. My life may not be great, but it is tolerable again. But…..these new rules may jeapordize that. We, as chronic pain sufferers, are people, citizens, registered voters, taxpayers, parents, grandparents, and friends also. We obey the rules set upon us, yet we are still linked in with those who won’t play by the rules. We matter also.

scott michaels

We must get thousands of people to not just protest buy be loud and totalky take over tge national mall. invite all media and let them know enough is enough. im sure paim reliever manufacturers will assist those in severe pain and help make this protest a reeality. take our meds on camera so the public can see we aee not getting loaded. its alkowing us to put down our walkers.

Tim Mason

I Suzanne I posted this on another thread here yesterday. This has been know since 2008.



You are so painfully correct on all points.

I read an estimate that one in three people will experience chronic pain, at some point in their lives. Any intelligent person can imagine what that might be like if it remains in government’s control, and their own doctor is NOT ALLOWED to prescribe what the patient needs! Imagine that it’s your spouse or child that suffers intractable pain! If you have some romantic notion that they are “tougher than that” or “their health won’t come to that,” you are delusional! Most of us who have these horrible diagnosis were intelligent, professional people or normally progressing children when something unexpected happened and we are suddenly a part of a world who hates us because we remind them of their own greatest fears. A world of incomprehensible pain and suffering that we did absolutely nothing to deserve yet we are (becoming) despised by our government, our doctors and our law enforcement system that is supposed to “serve and protect,” and we have done NOTHING to deserve this abuse! Would we treat diabetics this way if junkies figured out that they could manipulate their insulin for fun? Kids with ADHD take medication that other kids want and have to be careful about their own medications too but no one is terrorizing them! Alcohol and cigarettes kill more people every year than narcotics ever have but no one says a word because the powerful people of this country are making a fortune off them and enjoy the benefits of them too. We are NOT being heard but if everyone who posts would add the contact information of who to write to, at the national level, perhaps more of us could help with the effort to be heard in DC.

We absolutely must each take responsibility for letter writing and calling, if we are going to have any hope of stopping this witch hunt before it becomes law. If we wait until then, it will be too late. The time to act is now and we must each ACT!

Signe Topai

I was just recently told that I should be better by now by my Doctor. And when I complained the meds don’t always work after my second trip to hospital. My Doctor with Kaiser in Denver Co told me I was the only one in the entire Eastern Kaisers Chronic pain program who complained. When I told him I didn’t believe that, he took defence and started yelling at me. I am usually a happy person, even living with Myfascial Pain Syndrome and Fibromyalgia, but I feel helpless and thAt life is not worth living anymore. Don’t worry, I won’t take my life but I rely hate life right now!


Suzanne, all due respect, but I’m not clear on what’s happened with your friends. Did they take extra medication to relieve their pain and then not wake up? I think that’s an important clarification to make. Were they following their doctor’s orders or were they taking a higher dose of medication than was prescribed to them?

If they are taking extra medication, they may have succumbed to the medication side-effects. This is unfortunate, but chronic pain patients must know the risks. Many opiods will cause respiratory depression!

I take opiods but am in communication with my doctor. It’s danged hard because I’ve had periods of extended, increased pain. Yet, my doctor says not to increase my dosage. She did try me on an extended release Tramadol, but I was so discouraged to not have tolerated the medication. It helped so much with the pain, but I was sweating excessively and feeling nauseated and light-headed. I’m glad the doctor tried. I feel I have more control using the non-extended-release formulation because if I can tolerate my pain, I skip or delay a dose. Often I do just that!

Whenever I’m having an unusually active/demanding day or in the wintertime or during periods of extended poor weather, I struggle with my prescribed dosage. An example of an “unusually active/demanding day” would be our annual conference at work that lasts two days and after which I am barely able to walk. Last year, my doctor allowed me to take an extra pill those two days and I performed my job better – I was more engaging and cheerful and participated more with set-up/tearing down our registration tables, signage and easels.

I feel sad that I have to justify my needs like I do, but I understand. And now I’ve hit a point at which I ask for a dosage increase and the answer is “no.” And that scares me, because I don’t ask lightly. I take one 50mg Tramadol just before lunch, one 50mg if I plan to try to exercise in the evening and two 50mg pills at night because otherwise, the arthritis keeps me up and the sleep deprivation only increases my pain. But from the time I wake through lunchtime, I am unfocused at work – distracted by pain… and it impacts my cognition and I do my best to be very careful about how I react to co-workers. This doesn’t happen every day, but I wish I could have full-day coverage of medication without the side-effects of the extended release pill. I also take Prozac which intensifies any excessive sweating so I think that’s why I didn’t tolerate the extended release medication.

In a way, I wish I could try something that didn’t affect serotonin, but I think it’s unlikely I’d be permitted.


Thank you Suzanne, this is what I keep saying to anyone that will listen. I feel like I will be one of those, I’m not ready to die due to my pain levels affect on my body. 11 days now without my pain medicine due to insurance company prior authorization and a denial, nothing anyone can do. Today I go again to the doctor to see what’s next, was just there on the 7th this month. Been so sick and suffering in pain I haven’t felt this bad in 14 years. My doctors and I have written to Congress and the POTUS, no response, like you said, they don’t hear us.


Thank you Suzanne. I too suffer from chronic pain and fatigue being left with a couple hours a day feeling as normal as possible for me. I know it’s hard for others to understand our situation but that doesn’t mean it doesn’t exist. I have been taken down twice now in dosage and this has left me lying awake hours a night just so I have enough meds to barely get me through the day. I’ve listened to other possible scenarios the “so called” experts are attempting to get approval on like 7 days worth of meds. I fear for my future and what it holds for me. Getting to the doctor just once a month is a huge undertaking because I never know how I’ll feel from day to day. Heaven help us. I’ve been a chronic pain sufferer for 11 years now.

Charles Lucas

This article sets to remind me how hopeless this situation is. No matter how many internet based posts there are or petitions to be signed none are making any change that I can see.
I’m on my third month of taking massive doses of loperamide to stave off withdrawals after I was abruptly taken off opioid medication that successfully treated my pain for fifteen years. The reason? My pain management doctor said I was going to get him put in jail. He felt I still needed the medication because he gave me a few names of doctor’s who may still precribe. Much to my dismay none was covered under my insurance. I have tried to see a doctor for Subonex treatment to no avail.
As I stated, hopeless.