What I Told the U.S. Government About Pain

What I Told the U.S. Government About Pain

(The April 1 deadline to provide comment on the recommendations of the U.S. Pain Management Best Practices Inter-Agency Task Force is drawing near. Angelika Byczkowski is a frequent contributor to the National Pain Report. Here’s what she wrote in the public comment section for the Task Force to consider)

I’m writing to urge that you please don’t let the government set standard opioid dose limits for individual patients. Opioids are my only means of relief from a painful connective tissue disorder.

Angelika Byczkowski

Pain is, by biological design, the most forceful and unpleasant sensation a human body can experience. As a primal alarm of danger and impending death, it demands immediate attention and action. Pain is the most powerful persuader and has been used throughout human history to force people to act against their will by torture.

And when this powerful sensation becomes relentlessly constant, when there’s no escape from this pain, no hope for its easing, no end to its presence, life can become too painful to live. (as evidenced by the increasing numbers of suicides by pain patients cut off from their pain relief)

I inherited a permanently painful disabling disorder, Ehlers-Danlos Syndrome, and have been taking high doses of opioids for over 20 years. Countless other treatments, therapies, and medications were ineffective or far too expensive. For me and many others, only opioids provide effective pain relief.

Here is a list of non-opioid therapies, like those you recommend, which I’ve tried and found ineffective:

  • interventional procedures: nerve blocks, epidurals, and even surgery
  • biofeedback
  • physical therapy
  • massage
  • chiropractic
  • acupuncture
  • drugs used for Fibromyalgia: Lyrica, Neurontin, Cymbalta, Savella, Soma, Flexeril
  • psychiatric medications: antidepressants, antiepileptics, mood stabilizers, even antipsychotics
  • Stanford Pain Management Program
  • psychotherapy, including an addiction counselor who determined that I am not an addict, just a person in pain

Enforcing arbitrary opioid dose limits condemns many of us to live the rest of our lives tormented by our pain, which certainly constitutes a “cruel and unusual punishment” for pain patients.

The CDC Guideline was never intended to set specific dosage limits, yet it’s being used to legislate absolute rules for what should be individualized medical decisions. It is biased, based on admittedly manipulated data (overdoses were counted multiple times if multiple drugs were found), overlooks essential facts about opioid prescribing, and makes strong recommendations based on weak evidence.

Standard medication dosages imposed by government are inappropriate for medical practice.

Setting a standard dose for pain medication is like setting a standard time for cooking a roast without knowing the amount or type of meat (amount or type of pain) or the temperature of the oven (opioid metabolism of patient).

People have very different kinds of pain and different genetic profiles that cause them to metabolize opioids differently, so effective doses can vary by a factor of 100.

Worst of all, this effectively condemns many of our veterans to a lifetime of pain: those who fought for this country, were gravely wounded, and have permanent injuries that leave them with intractable pain. How can we force them to suffer like this?

Opioid medications are not as dangerous as rumored and do not “cause addiction”. If these medications were addictive as some claim, the millions of people who take a few opioid tablets after surgery would be addicted. This is clearly not the case.

Opioids have been used effectively against pain for thousands of years and are addictive for only a small subset of humanity, less than 5%. We cannot protect these people from addiction by forcing so many other people with chronic pain, conservatively estimated at 25 million, to live with incapacitating pain.

The frightening “opioid overdose crisis” numbers are created by adding together very different drugs, users, and motivations.

There is little overlap between legitimate prescriptions used for pain relief and illegal heroin and street drugs used for recreation. The conflated data confuses the motives of people in pain with those looking for a recreational high or staving off withdrawal.

Limits intended for one problematic population (recreational/addicted users) will strongly and exclusively impact a different and innocent population (patients with permanent pain).  Overdoses are mostly from multiple drugs and illicit opioids, not from opioids prescribed to the individual and taken as directed.

The “crisis” is one of addiction, not a drug, and the results after 3 years of imposing dose limits: opioid prescribing way down, overdoses way up.

When our pain-relieving medication is drastically decreased (and in some cases stopped without notice or aftercare), we can no longer function in our jobs or family roles, we become dependent and burdensome to our loved ones, and our lives become a progression of daily suffering.

Please don’t deprive me and so many other citizens of pain relief based on an arbitrary opioid dosage standardized for the mythical “average” American.

It’s not my fault that I need opioids because I inherited a painful condition.

It’s not my fault that some people using illicit opioids are overdosing.

Why must I suffer for the self-destructive behavior of others?

To read the report and for directions on how to comment, click here.

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Authored by: Angelika Byczkowski

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Stacie Wagner

I have made my decision to take my life because I will not continue to live in the pain I am in for any longer than I have to. I am not a coward but a realist. I was doing okay on the full amount of medication I was on but with the 90 MME rule and not being allowed to mix other medication with it my life is a hell spent in my bed. I leave my house about once every three months and take a bath/shower as often. I just pray that the next generation of chronic pain patients won’t have the same difficulty getting necessary medication for themselves. This law has killed me and killed my hope for a longer period of time. I am not depressed anymore about this. I now know that there’s an end in sight. I will not go to the streets for illegal drugs, I will not live in this pain and that only leaves me one option. Your rules are killing people. Many many people. Stop hurting the people that need these medications in higher doses Luke 500 MME plus, in order to shower and get dressed. They are not addicts they’re in pain. Our blood is on your hands just the same as if you had stabbed us to death. Again I am not depressed IAM in severe chronic pain. Chronic pain that can only be treated with medications that are strong enough to help it, 90 MME is not strong enough to help a pain level of 8 to 9 with medication on board is not livable pain. Thank you

Tyler

Today I found out that my recurring kidney pain the most excruciating thing I can think of short of somebody chopping off an arm or leg will not be treated because I already have a reduced amount of chronic pain medication. I’m literally not being treated for acute pain because I have chronic pain. So today I decided rather than end it all I will sell my house and sue. This is the only house I’ve ever had and the only ones my grown children have known but as my only asset is value it is better to give it up then to give up my life. Hopefully through this suit it might help me and help others as well by setting precedent.

Deb

Angelika, This letter you wrote to the government is perfect!! I mean it…I to wrote the task force but, my letter is in no way as good as yours. Thank you for advocating for us who suffer in pain.

Sincerely
Not an addict
Deb Jacobus

Linda

Well said, your very brave, thank you so much, I’ve suffered with chronic pain for 10 years, I have an auto immune disease (Sjorgrens) which affects every single organ in my body, multiple disc, herniated, way to many problems to list, I live in severe pain EVERYDAY,,,
I was prescribed oxycodone 10 mg’s @ 12 tablets a day, along with muscle relaxers, and meds to keep me from shaking like a bobble head due to essential tremors and Ativan for ptsd—
Since the so called opioid crisis, my meds have been taken away because my dr. Is scared to give me anything for pain, with my medication, I led somewhat of a normal life, there is no life for me anymore, what happened to the drs oath? to do no harm? sounds like the other way around to me, I have insomnia, anxiety, in’s, cluster headaches 🤕 I’m disabled @ 51 yrs old, and now we are put in the same category as drug addict, made to feel worthless, we need to stick together and give the cdc, fda, and flood the media with complaints, in the meantime I’m very tired , depressed, don’t know if I can do this anymore!!!
Please pray for me as I do for all you!!!

P.S. WE NEED A CIVIL LAW SUIT
THIS IS CRUEL AND INHUMANE!

Rebecca Hollingsworth

That would be a great thing if, by happenstance they were forced to “walk a mile” in our shoes. Even for just a day. I bet this “guideline” would be withdrawn at the speed of light! No rest for the suffering. Stay strong and keep fighting this archaic and inhumane treatment of chronic pain patients.

If the government is going to get fascist with citizens in honest intractable pain, why don’t we start random urine sampling for drugs on the demographic, geographic, economic out of work group, whatever that is being hit the hardest. people positive give counseling to, search their car and house, high school and college lockers for illegal drugs. period. Be proactive to the people who are causing this crisis. If we are going to cause pain, we might as well go total authoritarian/ fascist and get it over with and show the world what making America great is really about. Go back 80 years and 5,000 miles east,.

An FDA approved antibiotic Levaquin ruined my life and has caused me intractible chronic pain in both legs, calves, ankles. I cannot walk without pain using crutches. In wheelchair I am still in pain in legs. Levaquin caused both achilles tendons to rupture, no surgery possible the damage was so extensive. also caused small fiber neuropathy BOTH CALVES that has been confirmed with multiple skin biopsies. Also caused low testosterone so bad I have to use artificial testosterone once a week or it drops to life endangering levels THAT WOULD PUT MY HEART AT RISK. The FDA did this to me by approving a defective medicine that it now says should NOT be used for nearly all infections. The gov should be mandated to help me and others in real pain, control the pain that it is responsible for causing.
Paul Cahan
Passaic, NJ
youtube/floxinhell

Dear Angelica: Thank you for your courageous and thoughtful words. You brave soul. The geneva convention says that even prisoners of war are not to have their DNA effected in any way, and no unusual torture. Why are we prisoners of pain in America? What happened to life, liberty and the pursuit of happiness. What would the founding fathers say about this ridiculous situation except to fire/ not vote for/ and impeach anyone in power who is making pain patients unnecessarily suffer and loose what little time is left of their aging lives.

It’s easy to do!! Please comment to the DHHS TASKFORCE!!

Allison Rainey

I could not agree more. I just had a knee replacement and it’s one of the most painful surgeries I think I’ve ever had. My other knee needs to get done as well which I am absolutely dreading because of the problem with the pain medicine issue it is making it a lot harder to get through.this My husband has severe back problems he has been working for the Post Office for over 30 years he carries is a 50lb bag on his back and pushes a cart. His pain medicine has been cut down to nothing and he comes home absolutely miserable. All he wants is to get through the next couple years to retirement but now he feels like he’s going to be pushed into disability. I was watching a program on TV with a panel men and all they were discussing was that it is affecting all problem now and I don’t think it’s fair to make people that are in chronic pain suffer because of this I think it should be held up to the individual. People can sit in bars all day and get completely loaded and go to liquor stores and that’s ok and get in a car accident or get someone killed or damage their liver this doesn’t make sense to me.

FINALLY….The truth….reality. Angela God Bless you. I SUFFER GREATLY with 5 herniated discs and fibromyalgia of 25 years. I pray that your message does not fall upon deaf ears. You are able to articulate this crisis thrust upon us so CRUELY.

SHAME IN YOU CONGRESS, LAWMAKERS, ETC…..You cause me to live in pain severely undertreated. This gives me NO QUALITY OF LIFE. I HURT SO MUCH….

LAWMAKERS PLEASE HELP US. We are in GREAT PAIN. I, like Angela, live in pain that I challenge any lawmaker to endure for a day.

Andi Robertson

Well said! Thank you, Angelika!!

Holly

Well written Angelika! Thank you! ❤❤

Linda Olds

Exactly!
I was also fairly comfortable on my dose of opiates (I don’t like the word ‘opioid’; I first heard it only a few years ago.)
I wasn’t on a high dose, but it was still found necessary to decrease my dose. Now I’m in more pain, and it’s not helping any addicts! The doctors understand that I use opiates for pain, not addiction, so why are they allowing me and so many others to suffer?
I, too have tried many alternate therapies, and they don’t work. Many of the other medications that the doctors have given me are more dangerous than opiates.
And now I read that they have a scientific method to measure pain–biomarkers! Just one more indication that they don’t trust many of us.

white american Trash

Well look at this, again. I’ve read comments like these at other websites as well. It’s hard to believe that this is actually happening, in america. In the land of the free we’re not so free, are we? We should no longer pride ourselves as being the land of the free because its simply just not true, as a matter of fact, its a Big Lie. My so called constitutional rights has been violated time and time again, 7 times and no one was held accountable, its heartbreaking. But, I thought that was what our soldiers died for? Our rights, our constitution? Hmm. Long story short, when I was a child, I was put into a “Forced Child Labor Camp” right here in the good ole u s of a. They worked us like pigs. We, american children, were not treated like human beings. I was worked like a pig at the parents house as well. I would get labored so hard until my back couldn’t hold me up any longer. But, it didn’t prevent me from working the following day or even when I got a little older but, it may have contributed to the massive spine and nerve issues later in my life, you think? When I got out of the, “Forced Child Labor Camp” at 17, I was left homeless. One night, at 17 years old, I was walking on the sidewalk and, what do you know, The Big Bad gov in his big bad patrol car almost ran me right over going up over the sidewalk with the front wheels. Big Bad jumped out and came around and picked me up over his head and slammed me extremely hard, head and face first onto the car hood causing my legs to bend backwards up over my head hitting the hood and bending my spine in half. I felt an extremely painful feeling in my lower back, I thought the cop stabbed me. He dragged me to the station, chained me to the floor, like a dog, for hours. Then, it unchained me and kicked me out the door, with no explanation. Still, it didn’t prevent me from working but, do you think it contributed to the massive spine and nerve problems later in my life? This is just the tip of the iceberg. It is shocking

Marguerite

Well said and very true why should we suffer because some people choose to get high and die?
I responded to this call to action as well. Everyone needs to af their two cents. The only way to create change is to keep at this peck peck pecking away at every opportunity.
I know it seems redundant. I been pretty active in getting my thoughts out to these call to action and also on facebook and Twitter.
We will be heard and things will change but it’s up to us to stay in their face.

Beverly DeVoll

Very well said.

WILSON HULLEY

TELL OUR USA GOVT “TO BUTT OUT” OF THIS ISSUE…THIS IS WHY MANY OF US GO INTO CANADA…FOR PAIN TREATMENT

Rachelle Cavanaugh

God bless you. You just put it into words. I have spent 24 years with the man of my dreams and the last nineteen he has been disabled due to two failed surgeries and the RSD that came with them. Yes he was on ahigh does of opiates after 16 years of use. Now he is forced to take less than the CDC calls acceptable. He is giving up. He has no quality of life and feels like a burden, he feels like he has no value. I keep telling him to hold on something will change it will get better again. God i pray it does or i dont know whats ahead. Then there will be the battle of just finding doctors to treat the chronic pain patients. In Kansas they just want to force taper everyone until they can put you on methadone or suboxen and that is the pain specialists. Our first pain specialist offered a rx for suboxen at our first appt. He told me i might want to stay close for a week or so. Seriously. If not for our primary dr. of 15 years doing the cdc requirement. I belive he would have already lost the battle. The clinic our dr. joined and must follow their guidline sent us to their pain dr. who is the one that only offered suboxen. Pray they let drs be drs again and all these poor suffering souls can make it until they see the light.

Kathleen Kaiser

Wow, just wow!

Marie Kreider

Has anyone considered looking at other countries who have similar issues? Getting these countries support would really help especially if they have resources and effective practices in their views of physical and emotional support. In addition, it would be beneficial to look at their research on addiction

Maureen M.

Hi Angelica, very well written! Thank you!!
You know, when I have a better day (although still in writhing, continuous pain mind you) I feel like a ‘normal’ person…as normal as can be. NOT! ha ha. It is diffucult to really imagine being normal anymore.
But then when I have days like this past week where I cannot lie down to sleep (therefore I hardly sleep!) because the spine pain and burning won’t let me and I can only survive my days and nights with my opioids and soaking in ice packs… I pray hard, not only for myself to get through each minute but even moreso for those who haven’t any treatment anymore.
I cannot imagine not having even the slightest edge taken off my pain.
We experience things that most others just can imagine living with. And yet, we remain warriors of all sorts! We are strong, no matter how weak and lost we truly feel deep within our lives in pain. God help the CP community! God bless you. Maureen

Mareaeric Campagna

God bless you Angelika for taking the time to write such an informational letter that is such a testament to many of our journeys as we have tried countless medications, procedures, and different medical institutions to no avail. I appreciate you writing so eloquently on our behalf.
If the people in position of making such decisions for the community of chronic pain sufferers could experience our lives, feelings, pain, and daily schedule of how we handle our individual plan for getting through one day, I believe laws would change.

Rebecca Hollingsworth

Here here, well put. Thank you for sharing your story!

M Billeaudeaux

Thank you for your comments. Your chronic pain medication problem is very common among chronic pain patients. We can only hope that the physicians who care will step forward and protect these patients because they are not at fault here. Most, the majority, take their meds as prescribed, follow doctor’s orders, and do not or ever will participate in illegal practices. Again, why should they and their families suffer because of those who are addicted to drugs for no other reason than to get high? Shame on anyone who would take away life savings drugs away from a patient. Thank you again for sharing your story.

Robert Gripp

Well said. The current focus on opioids and prescriptions however well intentioned is wrong-headed. Do we not have an alcohol crisis? No matter, we must do everything in our power to make sure the “best practices” which come out of the task force to develop same do not do take the control and decision making away from our doctors to prescribe whatever they deem appropriate for our situation. Once adopted any resulting harm will likely remain for a very long time.

It is worth reminding everyone reading this that the number of us experiencing chronic pain is large enough to be an extremely powerful lobbying force if we only were able to come together as a cohesive force. Reliable statistics reveal as much as 40% of the entire US population has experienced or currently experiencing chronic pain. Unfortunately, we don’t have a leader to coalesce behind to harness this incredible force. So I implore each and every one of you to use your talents the best you know how to be a force for positive change. Someone out there is our leader who has the wherewithal to lead us into battle fully equipped to free ourselves of the bondage of persecution. Maybe you are that person or know that person. Regardless, please stay forever vigilant for any sight of our leader and do your best to solicit her or him to lead come to our need and harness the tremendous forces our numbers posses.

Denise Bault

AMEN!

James McCay

I second everything Angelika Byczkowski said!
Except I have three severe Neurological diseases (two of which are autoimmune diseases). I have Advanced General Myasthenia Gravis with Hyperthymusism (nearly all meds are blocked completely from working due to my XXL Thymus Gland, so I need HIGH DOSES of what does work). I guarantee no medical “expert” the CDC is using to justify trying to STOP USING OPIOIDS completely- has any clue what Advanced Myasthenia Gravis does to a person; nevermind the Hyperthymusism.

WAIT! I’m not done: I also have Degenerative Disc Disease (SIX bad discs in my neck & lowest back w/a rupture to the spinal sac). The rupture was to the sac that surrounds the spinal cord (aka annulus) and is filled with spinal fluid. I was diagnosed with the herniated disc at L5-S1 with an annular tear for 7-YEARS!. So I have basically bone rubbing against bone on the WORST disc to have this on in the entire spine.

I also have Fibromyalgia that mainly affects my calf muscles in both legs, but it causes severe pain in my entire legs. For 7-years quack Neurologists in Wyckoff Hospital never bothered to REALLY L@@K at the MULTIPLE MRI’s the hospital did from 2004-2006, yet they still told me I had Bilateral Sciatica!
Then I see ONE Neurologist (fresh out of school) at NYC Beth Israel Hospital ER in 2012, and he says “There’s no question that you’ve never had Bilateral Sciatica!”, then he proceeded to show me exactly WHY this made perfect sense (never done before).

I have 16-years medical field experience myself (before I got so sick). One thing that is a FACT more than any other in the medical field: IF YOU ASK FIVE DIFFERENT DOCTORS FOR A DIAGNOSIS, YOU WILL GET FIVE DIFFERENT DIAGNOSES!
I REFUSED any opioids that made me “high”. So they used high dose Methadone I had no high and was on that for 16-yrs.
Then it’s LOWERED because my pain doctor became paranoid by the DEA. My Quality Of Life is GONE! Thanks CDC.

Annell

In bed last night trying to go to sleep thinking maybe I won’t wake up tomorrow. I had to go to store needed maybe 4 things in bed 2 1/2 days got up once each day to feed cats hard time to do that. They are killing me with no pain pills. Just short note. Bad when u think/hope u will not wake.

Marshall loyd

I have been on opiates for 15 years and am being weaned off drastically I’m am now worthless I’m am a father and I feel as though I’m truly a burden I desperately want to throw in the towel I can’t take more torture I just want to go be with God now

Matthew L.

I fractured 7 vertebrae at age 12 when I fell nearly a hundred feet out of a pine tree in Ma. I’ll never be OUT of pain, only my meds help life seem tolerable.

It’s not the pain management chronic pain patients who are putting drugs in the wrong hands. Trust me no patient is offering out their meds. The “opioid crisis” has our Doctors expecting us to survive on less than half of what we need and were prescribed 10 years ago.

I can’t fathom how my intractable pain isn’t deserving of the 75 Mcg. Duragesic (Fentanyl) patches which are the ONLY effective treatment for me and a cancer patient is. God bless them at least their pain has an expiration date. I’ve already switched to non filtered cigarettes.

I am nearly 40 years old with 2 teenage children. I really wish that everyone from the Dr’s to the decision makers would think about the families of we who are suffering. They watch, they see and they are just as powerless as we are!

Like I said! It’s not the pain management patients! Trust me on that!

Amber

This article finally speaks the truth on this matter! I i truly pray that more people speak out about this so people like myself and thousands of others can get some relief from mind killing pain. Let the truth be heard

Hallie Gottlieb

What can I do to help? If I lose my pain medication I will not keep living. I’m afraid to move because doctors have a become too afraid of the CDC.

Tess

This was the best article that explains what pain patients are going thru..the weaponization of CDC guidelines have profoundly impacted my family in a horrible way. It has also devistated doctor patient relationship. And caused stigma, bias, discrimination for all pain patients. Patients have lost all power over what is put in and on our bodies. This article says it all. This has to stop our lives depend on it!

Bobbi Ferreria

I agree 1000% with Angelika, I too suffer horrendous pain. Even with me pills, pain always there, just not as severe. I can not live a decent life without my pills. If they take them away or cut my prescriptions, I honestly don’t know what I would do. I also saw many doctors and specialists with no avail, I took many different types of pills, those also no avail. I even had a hysterectomy (for the hell of it) ( I did not need it) no answer found for my pain. Please don’t make us in pain without our meds, we suffer too much. I am Just one of thousands who suffer pain, no one can find the cure. Thank for listening. Please help. Bobbi

Dr. B

Thank you! It enrages me that we have to beg our government to let us have something to allow us to function daily. Yet alcohol and tobacco are legal with little to no health benefits. I should be able to choose what goes into my body. I don’t need a nanny state to know what is good for me. I don’t use tobacco, alcohol, or drugs. I just want enough of my daily pain to be at bay so I can function the way I once did.

Cynthia

Well said! Bravo!.. I second that.
They wont let me cure my amxiety and pain simultaneously in Texas. They go hand in hand. My dr. Is furious. What to do?
You ate correct is saying it should just be up to the Dr. & Patient. What about our privacy and private doctors. This is too big brother.

Stacie Wagner

I’m so very sorry you hurt the way you do. I to am in chronic pain. I was on about 500 mg of morphine per day and was dropped by my doctor’s office of 15 years. Stuggled to find a new doctor. Now I suffer through the days and nights on 90 milligrams of morphine. No one has the right to torture anyone else, as you well know the incessant pain is torture. Thank you for sharing your feedback. Perhaps others will too.

Lauren Walker

Have you seen this yet? It’s nauseating to say the least and exemplifies the extraordinary arrogance and misinformation promoted by certain clinicians with a particularly prejudiced mindset. I couldn’t even manage to read it all. And, naturally, because it’s anti-opioid/anti-CPP, it gets a thorough welcoming into the prime real estate of publications:

The New York Times: Is Pain a Sensation or an Emotion?.
https://www.nytimes.com/2019/03/16/opinion/sunday/pain-opioids.html

Thomas Kidd

I sure appreciate your comments. I see myself in this. Thanks so much.

Michael R George

I live with crohn’s that rules out any anti-inflammatories and I can guarantee this will not go unchallenged

Bitetti Vincent

The crisis is crohnic intractable pain, not opioids – my wife has RSD. On the McGill Pain Scale it’s at the top. They – the Drs & insurance companies are complicit. My wife is 63! They took away over 1/2 of her meds and are going to take more. They tell her to try Pot. Are you kidding!????

Richard Parrish

If only these government “experts” could only feel our pain, they would be signing a different tune right now! We must stop this myth now!

Ali

The powers that be have taken, created, grafted, and placed all pain medication patients in with those who abuse, overdose, steal,
and make pain meds.
As a patient with chronic pancreatitis, fibromyalgia, and chronic migraines for 25 years plus I now live in fear of my medication being withheld.
The powers that be have bullied
me, demeaned me, categorized me, and are deciding if I am worthy to be free of pain with laws and standards that have been born out of illegal drug users.
As a retired nurse, patient, and using medicine that relieves my pain as prescribed now I am being bullied.
The data, statistics, studies are flawed. To save time putting me in with those who overdose, use illegally, and sell illegally is bulling me into there plan to decide if I am a worthy human being that should be prescribed pain medication.
That is bulling, demeaning me as a patient, catorigizing, and placing me in public shame. People shame me by ridiculing me, bulling me, and making me feel I can’t address this with my physician.
I can see why patients with chronic pain feel humiliated in public for having pain, taking medicine, and always told they just need to deal with it.
We are being bullied to the point of shame for taking as prescribed, working with our physician, and see physician as scheduled.
Take the studies, information, and data place each group as it should be. Quit be lazy and bulling us into believing you have our best interest. If you did you would have done it right the first time.

kelly

Outstanding presentation by a remarkable advocate & researcher for the pain community!!

Joseph Hargadon

Unfortunately the Veterans Administration does not offer any of those interventions four modalities. They can’t even breath I veterans with tens pads

Bernice moeser

I have taken opioids for pain for 15 years,I am not at all addicted to it,it helps me to live a better life with very little pain, itstheyoung kidsthat want to get high, they don’t even let a dog suffer,why do you want to do this to people in pain. If you think people aren’t going to find drugs on the street,your kidding yourself,it’s already in the school. So don’t blame doctors who want to help people in pain.its not their fault at all.

Cheryl Beane

The report by Angelika Byczkowski I just finished reading, What I told the US Gov About Pain , I totally agree with everything she said and I couldn’t have written it better myself !

Becky

Well said. I am sorry for your suffering. My daughter inherited EDS as well as other auto immune then contracted Lyme disease which was not found for years after an initial what we now know was a bulls eye rash. Never had a tick. My daughter has severely been disabled from pain of all types, and causes she was 23. She wants to work. She can’t even take care of herself. It is quite simple to save her life lost. She needs pain meds. Her absorption because of EDS is different than most.
Gall bladder surgery and endometriosis a total nightmare trying to manage the pain after. They gave her every type and kind of pain med which barely touched it until given a particular kind of opiod.
Here is a young woman who wants to work, wants to contribute to society but cannot due to the opiod limitation and the issues caused by people who took illicit drugs.
Totally this is discrimination and very closely as what happened to the Jews by Hitler. There is no difference. Brutal cold hard physical abuse and suffering, plain and simple. Only difference is our critical chronic pain patients are being driven to end their own lives. In the end the U.S. gov is killing the CPP folks in the name of power the same as Hitler’s Germany killed Jewish folks. No difference in the end really.

craig

The most succinct summary and criticism of the prevailing strategy to lower fatal drug overdoses and opioid addiction. Excellent job articulating the desparate plight of everyone in chronic pain for whom opioid therapy has been the only realistic way to live a dignified life. craig cornish