Largest Chronic Pain Patient Survey Is Still Looking For Your Opinion

Largest Chronic Pain Patient Survey Is Still Looking For Your Opinion

What is believed to be the largest-ever patient survey on chronic pain is being kept open. Over 3,000 chronic pain patients and loved ones have filled it out in the last year.

“There’s nothing like it out there,” said Terri Lewis, Ph.D., who is the study author.

She told the National Pain Report this week that the survey has generated over 200,000 lines of comment data which she and her team are busy tabulating.

One thing she told us really stood out—that respondents have tried 262 different alternatives to treat their chronic pain.

If you have not yet filled out the survey, you can do so here.

You’ll note that this survey originally was designed to present data to the FDA for its Public Meeting for Patient-Focused Drug Development on Chronic Pain last summer. But Dr. Lewis has kept the survey active because of the vast information it’s generating.

She said that the data collected will be able to use in three basic ways.

  1. “What the survey results can be are a weapon for people to take to their doctors, to their fellow patients and to their state legislature.”
  2. “The data will also give clinicians the confidence to change their behaviors and not be cowed by the government.”
  3. “It should also be a driver in helping change and create uniform policy which ultimately will hold people accountable to do the right thing.”

Dr. Lewis points out that a big number of people who are responding would otherwise be in the prime of their working and economic lives were it not for injury and illness that they endure.

“They are very unhappy with the system they have to rely on. They are extraordinarily negatively impacted by shrinking footprint of healthcare and public policy,” she pointed out.

Many of the respondents have been dealing with their illnesses and injuries for many years and had achieved some degree of stability of care until the opioid wars destabilized their provider system.

If you have not yet added your voice to this—please do.

If you are not yet following us on Twitter, please do:

@NatPainReport

@edcoghlan

To follow Dr. Lewis, and to keep up on her on behalf of chronic pain patients, find her @tal7291

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Authored by: Geoff Sims

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Ali

This has become a travisty of injustice on the patients suffering pain. There unalienable rights have been stripped, removed by force, and sentenced guilty with out a court of law. The CDC, FDA, etc ..have committed crimes of abanding the code of “first do no harm” and stripping layer by layer there rights to be prescribed pain medication by there liscensed physician.
This has continued on for months and who are the CDC, FDA, etc…
accountable to? They have allowed these agencies to promote suicides, bullying, demeaning, dehumanising, and strip them of prescribed medical care by a legal liscensed physician.
Who is the censor of these agencies? How do they justify not questioning there changed guidelines? Who is held accountable for this grave injustice committed on citizens of these United States of America?
The chronic pain patients community is being bullied into
following guidelines that creates
profound fear, ideas of suicide, and loss of any medical care by there liscensed physician.
Physician’s, Hospitals, and medical facilities are being bullied into following guidelines for there chronic pain patients. These guidelines we’re instituted, bullied into being, and pushed forward without first following the oath “first do no Harm”.
I have unrelentingly chronic pancreatitis, fibromyalgia, s/p cancer twice, and debilitating migraines. My live has been bullied into constant profound fear and depression.
Who is going to stop this travisty?
These United States of America has a history of abusive power as in the syphilis study, formula to third world countries, and radiation to newborn babies.
This will go down in history as well being a grave medical negligence promoted by own agencies in our own country.

Ali

Thru the years government says take care of pain, back off pain control, use alternative methods,
stop pain meds, etcccc.
So here we the chronic pain community waiting for another decree from those on high to decide if we are worthy of our meds, do we meet there guidelines, are we physically doing there ideals, have we tried all alternative methods, etccc.
Our physician’s have no say as to our care or medication yet they are the ones who evaluate us, test us, spent millions on education, and there knowledge is questioned by those who have never met me.
So here I am bullied by the powers that be putting me in with all there statistics. Pain reports are becoming a control of ideals and laws governed by those who are trying to prove they can manage our medical lives to show there panels, graphs, and studies to protect our lives they have never lived.
Therefore I live in constant profound fear 24/7 of every pain medicine and physician being removed from my life even though I follow all of the rules.
Since the powers that be decided to do this injustice to we chronic pain patients how are they going to provide the medical care we need to follow there laws and rules and sustain our pain medicatin without profound suffering pain and decreasing our quality of life.
I don’t have money to pay for gas to travel for alternative pain methods three times a week, I don’t have insurance to pay for this, my quality of life will be drastically reduced by any change. The powers that be changed the rules AGAIN now I am the chronic pain patient that has to financially, physically, and mentally change my life to meet there criteria when I followed all there rules and laws. Punishment for a crime I didn’t commit.

Lynda Mullen-Madrone

I am a person with chronic pain from Fibromyalgia and severe spinal stenosis, and arthritis. My pain is unpredictable, one day it’s my hips, another day my shoulders or knees etc. with the spinal stenosis my back and hip pain is getting worse each day. I am also the caregiver for my partner who suffers from chronic pain after 32+ othropedic surgeries starting 50 years ago. She has been on opioids for 28+ years. Before she was placed on opioids we could never make plans because we would never know what her pain level would be on any day. She was unable to help with the maintain end of our home and life was very restricted, after being placed on pain meds we were able to live a nearly normal life and have had a happy life. Now she is being forced to taper off all pain meds and once again our lives are becoming more restricted. And if I am forced of my meds how will I be able to be her caregiver? I help with all of her ADL and help with her transfers from bed to wheel chair to recliner or into or out of cars. If I can no longer do this do to my own increase in pain, at some point she will have to be placed into a convalescence facility.
I do not want to see this happen, we need to be able to take our pain meds to maintain our current lifestyle. We are NOT addicts. We take the meds as prescribed, never in 28 years have we ran out of meds early, asked for more meds or ever done anything other than take our meds as ordered. So why are we being punished for the illegal meds the addicts in our town use. Most of those meds come not from a drs prescription but illegally across our borders from Mexico and South America. You may take our meds but it will not do anything to stop the spread of illegal drugs in this country.
I ask that you think about us, the many people in the US who suffer from horrible chronic pain and take our meds responsibily.

Chris Slagle

I am blessed to not have some of the awful physical maladies people talk about here. After two bad car accidents, 1 surgery, years of neck and shoulder pain, headaches and then an IC diagnosis in 1994 with chronic testicular pain….I too have run the gambit of meds. One thing recently which has bothered me is the unwillingness of many pain doctors (mine included) to let us try medical marijuana but still receive our pain meds. It’s a leap to suggest we have to get off of something we know gives relief, just to try something else. I for one had my days with pot. I’m more interested in oils, salves, etc., than just getting high.
To all who suffer out there…..keep the faith. 😇

Steve Hix

Oregon needs to rethink the horrible plan that the HERC committee plans to implement. People suffering from uncontrolled pain are not the problem. We thank it medicine as prescribed. The problem that nobody wants to talk about is that it’s heroin and illicit fentanyl, cocaine, meth, and other illicit drugs that are killing people. It seems clear that the people supporting taking away our medicines that have worked for decades in a lot of cases, don’t have any compassion or empathy for the millions of people suffering from intractable pain or illness. It’s time to let Drs and patients figure out what’s in our best interest. Not policy and law makers. There is way too much suffering going on and in some cases it leads to suicide. Please rethink your shirt term cute for a long term, life long problem. Thanks

Nancy

That is great that the lawmakers heard the story of one patient. However, this should of been addressed before they have made those of us in pain suffer. Now most every pain doctor has left. We are not the problem, we are not choosing Heroin we just do not want to suffer. It was the Government Agency JCAHO that changed the way pain was treated as they saw a large group of people suffering. Now they want to try and hear our stories? The problem is the fake pills laced with Fentanyl that is killing Americans. If parents do not lock up their pain medications and their teens get addicted it; again is not the fault of the responsible pain patient. The person suffering with severe daily Chronic Pain has no voice! Shame on all of you in the government for choosing us to suffer when medications taken as prescribed works!
I do want to thank the person who spoke for all of us. Many can’t travel anymore as we are trapped in PAIN. God Bless you!
Make sure you all fill out the survey. If for no other reason than telling your story, maybe one person will listen.

Kelli

Early childhood abuse, working like a man and final straw a one year old car totaled with me in it. Surgery isn’t an option unless I get where I can’t walk. Pain clinic hurt more than they helped and then refused my Medicare. I’m on a small amount of medication but all the Tylenol is taking a toll. Why are we refused help and treated like an abuser? When abusers are actually treated better?

After a drunk driver destroyed me while negotiating a corporate merger in 1998, l have been left with 6 cervical and spinal fusions. Far worse is 3 world class brain surgeries to save me. The crash impact also triggered Trigemilal & Occipital Neuralgia which turned out a very bad case.

Consider going in one second from a very well educated professional who provided for family, love family activities and simple pleasure of the outdoors as a life sportsman.

Now after 20+ years, of medication that allowed some state of normal life. I have the best doctors, but the Gov. In infinite wisdom has eliminated a protocol has decided what is best. I now have lost ability to eat from pain and spend days in bed.

Has there ever been consideration that 5 years lived in some normal life is far better than 10 spent suffering. Your efforts especially from Vogel are at best the words from a man who has no grasp of the most painful disease on earth.

Step up and change your laws as you completely forget those who follow the laws, doctors and deserve a life as you

Jackie Blue

I am too afraid to do the survey, pain clinics have given me PTSD.

Since being struck by 2 texting drivers while waiting for a red light, I have been dealing with severe disabling pain every day. 7 years of surgeries then diagnoemsed with an aggressive cancer. So I went through cancer treatment twice, had a hip replaced. I beat type 2 diabetes by losing 40 lbs. I still have severe blockages in my lower spring they label as inoperable, and 2 knees that need to be replaced. Through closely managed medications, I improved my physical health and even took a part time custodial job. My doctor praised how much I have fought and accomplished. Now they are taking away my meds that have helped me get this far. Why do Heroin addicts get free Methadone? They don’t even have a plan to help patients withdraw from legal Opioid? Why? Withdraw can kill you?? I tried to stop my meds voluntarily and couldn’t get out of bed to go to the bathroom. I had to call off work. I don’t understand any of this. I have come so far and for what? To be bedridden or die from withdraw? Their help is more like mass Genocide. Many will die from withdraw. Many will die from blood pressure spikes associated with severe pain. Many will die from strokes. Will Insurance companies send me a visiting nurse? How about food. If I can’t stand long enough to make food or drive to buy food? Obviously those who make these laws have Never suffered severe chronic pain. Physical therapy? And all their voodoo do nothing for severe pain. Twice I got infections from steroid injections. This looks to me as population control. Mass Genocide. My prayers to everyone else suffering.

Sandra Gunter

PAIN
a Partner in your life
a Piece of you
a Prelude to your decisions

you Acquire comfort measures
Activity is carefully planned
Acceptance is needed

it Interrogates every point in life
Interrupts precious moments
Intercepts when you’re having fun

Never understood
Never believed
Needs to be accepted, believed, evaluated, understood and pre-empted

Pain does not discriminate nor judge
Only those looking at PAIN ignores or judges it

Those baring it, face it everyday

Sandra Gunter
nursingone2@yahoo.com

Phillip Johnson

May all those in Government responsible for curtailing Doctor/Patient sacred relationships and their pain management……….be damned and committed to eternal HELL…!!!!!!!!!!!!!!!!

To Dr Heck I say WTH?

We have been suffering so long and many are now bedridden. That is why they cannot do something of this nature. They can not even meet basic personal needs

Diana Whitaker

I am a disabled veteran, and have major pain in my neck, between my blades, lower back, right hip, and both knees and both feet. I have PTSD/MST, and high anxiety.My hydrocodone was stopped cold turkey.The VA will not prescribe me opioids or narcotics for pain or anxiety. I been on tramadol since 2002. No break through pain medications have been prescribed. This is clearly torture, and major suffering.

Bill Summers

You only want the GOP talking points. Their 70% on only their twisting the facts, Take last night for example read his then read mine. You aren’t even trying to cover your partisanship. Please give me a call. I am retired, my posts are factious. you have my number so do have someone call please.

Thankful to hear the report is still open, sad to here there’s only 3,000 who have commented when there’s millions suffering. So many have no idea this even exists. It was a mere mistake or prayer answered one when I happened upon the National Pain Report. Unfortunately when it comes to steps one through three the only one that’s truly going to work is number three. We’ve done everything in our power when it comes to our congressman, senators, Etc. with the exception of hitting them over the head with a baseball bat to try and wake them up. I have one of the kindest and smartest physicians there are, but just what do you think he would do if I handed him this and said do something? We need to use a little common sense here. Until our physicians can practice medicine the way they used to and without fear of the government throwing them in jail for doing so, absolutely nothing is going to change. I still think prayer will help us more than anything and yes that is my opinion only. I want to take a moment to thank the National Pain Report for allowing us to have somewhere we can go to voice our opinion and be heard. (Whether our comments seem to be good or bad to others who are in the same boat.) Sometimes it feels like this website is the glue that keeps us held together of course with the help of the Good Lord above. May God continue to bless each and everyone of you and give all of us the miracles we truly need.

Debbie Nickels Heck, MD

How can I find out if I’ve responded to this? I’ve answered so many surveys.