US Pain Looking for Input from Chronic Pain Community

US Pain Looking for Input from Chronic Pain Community

By Ed Coghlan.

America’s largest and most influential chronic pain patient organization is the U.S. Pain Foundation.

U.S. Pain, which is under new executive direction, wants to make sure that it is effectively supporting and advocating for the chronic pain community. In order to do that, U.S. Pain needs to know more about the people it serves.

The interim CEO for US Pain is Nicole Hemmenway, who has been fighting her own chronic pain issues for much of her life. She is an author, a motivational speaker and a chronic pain advocate. To learn more about Nicole, read here.

As a result, US Pain has released a survey that will not only collect valuable data from the chronic pain community but is designed to create information that will help the organization (and others) better serve patients and their loved ones on their pain journey.

It’s a 20 plus-question survey that can allow US Pain to better guide respondents and their loves ones on their pain journey. The questions cover types of pain condition, pain severity, treatment options, and more. It should take 5-10 minutes to complete.

US Pain, which has been leading the fight to incorporate the reflections of the chronic pain community into federal and state data, will share the results of the survey via the newsletter in the coming months and share those same results with the National Pain Report and our audience.

To fill out the survey, please click here to send your comments to the US Pain Foundation.

As Ms. Hemmenway has shared with US Pain audience and others that follow her journey:

“On my quest for answers, I have seen and done it all. I have visited the most renowned medical institutions and saw specialist after specialist. I have tried many conventional and unconventional treatment programs. I have screamed in frustration and have cried out in pain. I have been there. I understand the torment. But I also know miracles happen. I should be dead and yet somehow I survived.”

She’s not alone.

Speak your mind and let the world know what the chronic pain community looks, sounds and feels like!

Thank you.

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Authored by: Ed Coghlan

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Alessio Ventura

….continued…by the “stoism” supporters. The mistake government, media, & certain physicians are making is that they are proposing a “One size fits all approach” to treating pain, and it just isn’t possible.

(5) Opioid pain medicine is dangerous if used improperly, but so is medicine used for depression, anxiety, and countless other comditions. Alcohol alone kills 88,000 per year. NSAIDs, like inuprofen, naproxen, etc, send 100,000 to the ER each year, and at least 15,000 die from them each year. Yet alcohol and NSAIDs are freely available without prescriptions. Example: In Florida, a typical CVS store will sell you as much beer as will fit in your vehicle, and you can make as many trips as you would like back to CVS for more once you drop your loads at home. Any teen can buy as many Advil (ibuprofen) pills as they like. Het CVS earlier this year announed new restrictions for pain sufferers.

“Opioid Crisis” has become “Group Think”, a buzz word, a PC phrase, and everyone jumps on the bandwagon, even though by comparison to other “legally obtained drugs”, like alcohol and NSAIDs, death and injury from “legally obtained” opiates for legit pain sufferers pales in comparison.

(6) No matter how much we write to our representatives in local, state, and federal government, and to mass media, pain patients are purposefully not being helped in this “crisis”. They are simply the forgotten victims, like peaceful and legal gun owners who must face ever more restrictive gun laws because the bad guys are conflating the data, making it too difficult for lazy politicians to wade through it and understand the actual facts on the ground. Again, MJ has a major imfluence here.

(7) Given (6), we MUST change our thinking. I used to be dead set against using the black market for meds. But when doctors will no longer prescribe 30mg OC because it is popular among drug dealers, what options do you have if you really need it to control your pain, and you have tried everything else? The same applies to Opana ER and other meds.

We MUST fight harder for our individual liberty, our right to treat our pain in the way that WE see fit, not the way the president’s commission, led by Chris Christie, the failed NJ governor, say we need to. If the black market gives us that option, then we need to take a serious look.

Alessio Ventura

Looks like the survey is closed.

Too bad.

Here is my input anyway:

(1) Study after study shows without question that by far the “opioid crisis” is caused by the ILLEGAL DRUG TRADE, and NOT by validly prescribed pain medicine for legit pain:

(2) The marijuana lobby has been successful in their anti-opioid crusade, and now there are several politicians and for politicians making big investments in medical MJ companies (e.g., John Boehner, former US House Speaker). These politicians are behind the draconian opioid restrictions being enacted in various states.

(3) “Pain” is a real illness, causing countless hours of lost work and decreased productivity. The draconian cuts are making this worse, as people fall into withdrawal sickness, and their pain goes ever higher. Disability and suicide are on the rise as a result.

(4) Pain is both a physical as well as subjective phenomenon. From the bodily origin of pain, signals traverse the nervous system until they reach the brain, where the signals are processed and interpreted. This is “physics”, and in particular it is an example of very sophisticates “Signal Processing”. The complexity of the signal processing is currently so high that we have yet to make significant inroads into how the signals can be measured in a reliable fashion; ultimately, we should be able to develop probes of pain signals and provide accurate physical measures of pain. Some work is being done in this area, partly based on electrical engineering concepts developed for electronic signal processing systems. However, human pain signaling is much more difficult to understand and measure

The subjective element of pain is very much person-specific. There are some very stoic individuals who can deal with a significant amount of pain, yet there are others who need help. One BIG problem we face in the pain community is that the stoic persons, and their supporters, point to their ability to deal with significant pain without opiates, and that has somehow become the “ideal” to achieve; that is, “Suck it up, learn coping strategies.” This approach has caused countless suicides, as people who could live a good life by managing their pain with opiates are taken off the medicine (to be continued)…

Jacqueline R Hausler

I am a legitimate chronic pain drug patient who has been on pain medication for at least the last 20 years. I was in a car accident back in 1990 and have since had 8 neck and back surgeries and suffer from a myriad of other related medical issues. I have tried all the alternative options for pain reduction and am also allergic to most of the other alterative pain medications. As a result, my options are very limited. In the beginning, I participated in the Johns Hopkins Pain Medication Program for pain patients for nearly a month that included a battery of comprehensive psychological testing and other related medical assessments that determined that it was not in my nature to become abusive to pain medication. It was also determined that due to my significant sensitivity to most pain medication treatments that Dilaudid and now Extended Release Exalgo represented the safest and most optimal treatment modality for me. I am also moniored on a monthly basis by my doctor including periodic urine testing.

However, it is becoming nearly impossible to obtain my medication as CDC, HHS, FDA ,DEA, and our insurance company -BCBS have drastically reduced the amount of pills/medication I can receive on a monthly basis. The quantity limits have been severely reduced from 2016 to 2018 and the President is now recommending that opioid prescriptions be cut by another one-third over the next there years. Previously, I had been on short acting Dilaudid but was required to transition to Exalgo ER in January 2017. As a result of the forced change, I ended up in the emergency room because my medication had been reduced too quickly. The Attorney General recently suggested that 90 milligrams be established as a monthly cap and that he believed that was probably still too high. Not sure why the AG was making such a medical statement given his lack of medical credentials.

On February 28, 2018, my insurance company determined that my medication must now be cut in half without advance notification or a timeframe to tapper down to the reduced level directed. More concerning is that my prescription could not be refilled immediately, leaving a gap of at least 35 days that I would not have had any Exalgo medication to take. Subsequently, the Pharmacy allowed a different reconfiguration of my prescription with the same number of milligrams.

Irene S. Mitchell

I have been a cpp for 20 years. I had a wonderful doctor who I had seen for over 10 years. Last year he was targeted by the state of Illinois for various things, He was never convicted for the charges. This targeting however made him fearful of prescribing opioids to his pain patients. At the time I was completely cut off from my medication and have been in tears everyday. As all pain patients know, pain from cancer and pain from chronic pain are no different. Pain is pain. Because of my high dosage of morphine (600 mg. per day and 2-30 mg. oxy ir every 4 hours. I obeyed all the requirements. ie.pill counts, contracts, urine test at every visit. My insurance company required PA’s due to the dosage and the drugs which I obtained. I have had to go on Buprenorphine to stop the discomfort from the loss of medication. I still have not found a pain management physician. You are treated like a drug seeking addict even though you have no addiction history. They will not help you. The doctors are fearful now. Chronic pain patients do not want to be treated like this. The opioid hysteria has caused us unnecessary suffering and eventually many of us will not be able to take the pain anymore and give up the fight. Opioids allowed me to live my life and be a wife, mother and caretaker. I can no longer fulfill my promises to my family and I feel useless. Chronic Pain is real and doctors should be able to take care of their patients without fear of the government overreaching into the healthcare decisions they make for the good of their patients. We are not the people who are abusing the drugs. Now the government is targeting
pharmacies and doctors and chronic pain patients. We need help now. We don’t want to get high, we just want to be normal.
Everyday, before I get out of bed, I have to weigh how much I can do before I will have to stop.
If I go to the doctor, store or care for my elderly parents I have to rest and recuperate for a day or two after. None of us asked for this. We are not sissies. For some of us the pain is often so severe that we plan what our end of life will look like. This should not be our lives, not when we obey the rules and need opioid medication to cope. It is as necessary for us as insulin is to a diabetic. Please consider us when you vote to change our lives. Often we look normal on the outside. No one can see what our lives are like without medication. Believe me it is hell on earth.

Sandra with chronic pain

I hope that the results of the survey will be shared with someone who is involved in the decision making process of the opioid guidelines ,otherwise, it’s just another survey with the same end results.


Instead of stopping the heroin, fentanyl and carfentanyl ,the CDC, DEA, CMS and so many others, have attacked the legally prescribed medications that give CPP a decent quality of life. Having had CP for 20+ years I raised 3 wonderful boys, worked full time in the ER, bought and maintained a home, gardened and basically lived my life doing what I wanted to do. But thanks to this false opioid crisis focused on the millions of CPP, my life is no longer worth living. From a decent Q of L to laying in bed crying in pain because I have had my medications taken away. No reason. No explanation. No concern for my well being. I did nothing wrong but follow all the rules of my doctor and state, passed humiliating drug screens and blood levels, and why did I lose them? Not because of my medical insurance, or my prescription insurance, my meds were pre-approved. But because this witch hunt on CPP has made it to my doctors medical insurance, they are now dictating what I can and cannot have. Have I ever been asked what would work best for me? No. The insurance company of my doctor says I must have a useless dose of Extended Release medication at such a low dose it does nothing. And it is the most expensive of the pain medications. My insurance will not pay thousands of dollars for this medication come 1-2019 so then what are my options? I am not allowed to have the 80 mme a day of medication that works so well for me, and that I can actually buy myself if need be, that I could still actually have a life taking and get pain relief. No one cares. Been through therapy, injections, more injections and therapy with no relief. I have lost the wonderful person that was with pain relief. I no longer want to live. And I never thought I would be spending my retirement in such a nightmare of pain. I have also lost my anxiety medication I took for extreme anxiety/ptsd. After taking them with pain meds for 20+ years responsibly I cannot have them either. My honest fear is that the CDC, DEA, CMS and the rest have taken this too far and I will never have any relief from the pain I never asked for. How can I fight my doctors medical insurance? He does not care about me either. I have no where to turn, no one wants a CPP that needs pain meds. And all this time the junkies have been able to call their dealers for a fix! And CPP suffer and commit suicide. I am thinking some pretty terrible things lately….

stephanie logan

I’m very happy to hear this. I’m a 56 year old chronic pain patient. My journey with pain started at the tender age of 12. What I did not know until age 30 I suffered from endometriosis. I tried everything including a two part historectomy. Thecsecond part of the historectomy almost killed me. My bikini cut got saved My infected and almost cost me my life. I had an RN at my home for 4+ months to clean my wound and repack it. I now have CRPS from that horrific trama. My body create to much scare tissue now my organs stick together from time to time causing so much pain in my pelvis area. I will no longer get any kind of surgery’s unless to save my life because scar tissue issues. I did not start oipiod therapy until late 30s. I took so much over the counter meds I developed a bleeding ulcers and swollen liver.

Nobody ever wants to become a chronic pain patient! I never wanted to have to take oipiod pain medication! In fact if I did not need it I would not ever go back to a pain clinic. We are treated like criminals.

My last appt with pain Doctor he said to me as I was leaving “wouldn’t it be nice to get off these meds so you would not have to see me your parole officer?” He was serious. We are being treated like we are on parole. I’m a law abiding voting citizen.

My story is much longer than this. You get the point. I have been forced taper 70%. This has stoped me cold in my quality of life. I find myself in the fetal position so much now. The pain is so intense I almost pass out or throwing up for hours at a time.

Please help chronic pain patients get back there life saving medications. Stop the unessisary subsides of pain patients. Life seems not worth anything if your quality is taken away.

Andrea Carb

I was led to believe that we could write to the FDA and other govt.agencies by Sept.10 postmarked midnight??


Thank you! for providing this important survey.
I live w/ intractable, electrifying burning, stabbing, throbbing, pins and needles pain of Central Pain Syndrome 24/7 w/ no relief. My only relief is when I sleep.
I’ve tried pain meds, but NOTHING helps, so I make the best of it w/ no meds, one-moment-at-a-time.

Wendy Munson

Thank you Dr. Richard Lawhern. What a terrific article. Can you get it to Dr. Terri Lewis so she can consider it? And Terry, why are you so hopeless below about these efforts to organize & change the minds of decision makers? Why ask why? Let’s ask why not? And to all of you fellow sufferers - I feel as if I could have written your posts - the ignominy of being treated like a criminal for the past few years. I remember the first time I saw the Time Magazine headline screaming about the Opioid Epidemic! I truly didn’t realize it was talking about me & how terribly this hype was going to affect my ability to lead a normal life while suffering incurable, intractable pain. For 17 years I’d managed with compassionate physician, then retirement & relocation removed my support team. Now we must add humiliation to the pain of burdens to bear. It is well known that pain messes up cortisol levels & that leads to more illnesses.

Neldine Ludwigson

Done. Wish I could be there in person

I have been on pain medications for over ten years. I have chronic back pain that is only getting worse every time I have an XRay done of my back. It is so very frustrating that even though my back is getting worse my pain medications are being cut. A few years ago I had extra medication when it was time to fill my prescription now I do not have enough to give me relieve on a daily basis. I do not blame my doctors they are very compassionate but their hands are tied. In order to keep practicing medicine they have to comply to a strict regime to satisfy the DEA. It is so frustrating that They categorize every person in the pain community and treat us like criminals. I am not going to overdose on my meds I am not going to sell my meds and or give them away and I am not going to get any better when it comes to pain. I just want to be able to do things somewhat normal things and not have to stay at home because I am in excruciating pain. I was so much better 3 years ago then what I am now. I know that I am not alone in this war on drugs but the war should not be with me or anybody else who is in pain and taking our meds according to our prescriptions. I no longer take anti anxiety meds because of others misusing the drugs. I am 56 years old and I have never over taken my medications but yet I am put in a category of doing just that because of other people doing so.
I am Frustrated and Angry and I am in PAIN. I need to get back to three years ago where I was doing things and having a somewhat normal life and had plenty of medication to get me through a day.


What is it like to be a pain in patients with severe pain being reduced from 360 some mme 2 a noun one eight seven on the way 2 a supposed 90 mme. I will never make it. I’m saying goodbye to all my loved ones. This is genocide. What is it about the words you are killing me man but they do not understand at the CDC and DEA. this is not even affecting the very thing that they say they’re correcting. It is simply killing the chronic pain patient..

Here is an article to share with your doctors and your legislators. It debunks the prevailing hysteria, hype and fraudulent nonsense which dominate most of US policy on the prescription and management of opioid analgesic pain relievers. Abstract follows. Please push US Pain. This is the closest I have ever come to finding a “smoking gun” which proves that the writers of the CDC opioid guidelines committed fraud when they issued their disastrous document — and knew it at the time.

Abstract Follows:


Sharp increases in opioid prescriptions, and associated increases in overdose deaths in the 2000s, evoked widespread calls to change perceptions of opioid analgesics. Medical literature discussions of opioid analgesics began emphasizing patient and public health hazards. Repetitive exposure to this information may influence physician assumptions. While highly consequential to patients with pain whose function and quality of life may benefit from opioid analgesics, current assumptions about prescription opioid analgesics, including their role in the ongoing opioid overdose epidemic, have not been scrutinized.


Information was obtained by searching PubMed, governmental agency websites, and conference proceedings.


Opioid analgesic prescribing and associated overdose deaths both peaked around 2011 and are in long-term decline; the sharp overdose increase recorded in 2014 was driven by illicit fentanyl and heroin. Nonmethadone prescription opioid analgesic deaths, in the absence of co-ingested benzodiazepines, alcohol, or other central nervous system/respiratory depressants, are infrequent. Within five years of initial prescription opioid misuse, 3.6% initiate heroin use. The United States consumes 80% of the world opioid supply, but opioid access is nonexistent for 80% and severely restricted for 4.1% of the global population.


Many current assumptions about opioid analgesics are ill-founded. Illicit fentanyl and heroin, not opioid prescribing, now fuel the current opioid overdose epidemic. National discussion has often neglected the potentially devastating effects of uncontrolled chronic pain. Opioid analgesic prescribing and related overdoses are in decline, at great cost to patients with pain who have benefited or may benefit from, but cannot access, opioid analgesic therapy.



I really appreciate all of the hard work that our chronic pain advocates, like Nicole, put in on our behalf, unfortunately it is too little, too late. What I mean by that is, today there are millions of chronic pain patients who have already had their pain meds cut drastically and I’m pretty sure that even in years to come, it will be much too late. With all of the CDC/DEA threats and guidelines, there’s no way in the world that they are going to reinstate the amount of pain medication that we were on before the “opioid epidemic” hit us. Moreover, new chronic pain patients will not be prescribed the appropriate amount of pain meds required for their survival in our world. I don’t want to sound unappreciative to our advocates, but in the fight for “our rights to adequate medical treatment”, it will never be the same. Chronic pain doctors are way too paranoid to take the chance and really help those who are suffering and struggling to participate in their own life, play with their grand children, mow the grass, go out for dinner with friends, make love, do household chores and projects just to name a few. The script has already been written and there’s nothing anyone can do, people suffering from all manner of terrible conditions, will become couch potatoes, slip deep into depression, maybe lose their jobs, let their houses fall into disrepair, plus a hundred other scenarios, all because some government officials caused a panic and it is ALL based on incorrect and skewed studies. For example: they claim that 85% of ALL drug overdoses are caused by opiates, the truth is that 85% of overdoses are caused by heroin and fentanyl or a mix of both, in the chronic pain community however, chronic pain patients with legitimate prescriptions account for only less than 1% of the deaths and overdoses, but the government in all of it’s wisdom and awesome power, reacted to the false statistics that they were supplied with and created DEA/CDC guidelines so rediculous that nearly 100% of all chronic pain patients are now living with unbarable pain, their lives ruined, suicides on the rise and as we all know, once the government does a thing, they will never walk it back, admit they were wrong, fix the problem, it just won’t ever happen. Even if they do, do you think your chronic pain doctors are just going to reinstate our meds back to where they were before the panic? The damage is already done and it’s NOT reversible. The pain we are now living with is our new normal.

William Dorn

She should be at that FDA meeting in July.

What does chronic pain look like, feel like?
At the moment it’s sitting in a recliner …knowing you have only the next few moments of the morning to do so til you go to bed tonight and pray you sleep. You fractured your bad knee 3 weeks ago, you’re at your mother’s house because your dad’s been in and out of the nursing home and hospital the last 39 days. You see her mind beginning to wander. You have an 8 year old who depends on your every move. You find yourself with noone to help. You’ve not stopped and you know you can’t. Its hours before you can take any more medicine. You think back to how it used to be when your physician was allowed to help you literally live your life, you’ve prayed and cried til there are no tears left. An hour after you take your medicine your pain level went down to 8. Its time to go now for there is a full day of work in front of you that won’t and can’t wait.
This is what chronic pain is like, to me anyway.

Wendy Munson

They should look at the survey Dr. Terri Lewis is compiling.

Maureen M.

I already did the survey via the US Pain Foundation. I like the questions and hope that the info provided by all helps give them a great idea of our conditions, how much we are suffering and how much help we need.
I wish Nicole the best with her new position.

Cathy Patteson

In filling out the survey it would not allow you to move forward on questions with “other” answered even with the answer in the blank….just thought someone might want to check that out…caused me to have to give incorrect answer in order to proceed!


What I have experienced in
 ” The war on opiates ” is medications that I have been taking for years, that have kept me somewhat stable, are Dr’s constantly telling me that “YOU COULD OVERDOSE” This is true if it were my intention, I could overdose on sugar, caffeine, over the counter medications and even water!
 I have never failed a drug screening or a pill count. They keep replacing medication with stuff that is not working and cost three times as much.
They make me feel like a drug addict and treat me like a Moran! When I try to tell them that I was at the lowest dose in 15 years, all I get back is a blank look.
Please stop treating me like an idiot, listen to what I am telling you I am not asking for stronger medications, all I want is the medication that I was taking, that was working some of the time. All I want is to ease the pain just a little, is that asking to much?
I was on the same dose of opiates for 10 + years
When it stopped working as well as it did when I first started taking this dose I never asked, not one single time to be put on a higher dose.
I could overdose from under treatment, trying to find alternative things to ease the pain.
Please listen to me.


I am a disabled veteran. I have ehlers danlos syndrome type 3. It is a genetic disorder that keeps me from producing collagen. It has caused me cervical stenosis, bulging disc, DJD, 4 curves in my spin, dysautonomia, TMJ, trigeminal neuralgia, fibromyalgia, insomnia is, migraines, ptsd. I have been on pain management for 10 years and klonopin as well. Last June BOOM. Both were taken away. No help. No taper. No rehab assistance. No hospitialization to monitor for seizures due to stopping the klonopin. I have been through 4 PCP in last year. The present one I have begged for help. I now have developed crushing rib syndrome. I feel like I’m being tortured. Please God give me back my quality of life.