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.

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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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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.


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

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

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.