What Does the Largest Chronic Pain Patient Survey Tell Us?

What Does the Largest Chronic Pain Patient Survey Tell Us?

This week, we have continued the National Pain Report’s support for promoting the largest chronic pain patient survey ever. If you haven’t taken the survey, you can by clicking here. If you haven’t yet filled it out, please do.

In her first report, Terri Lewis, Ph.D.—the author of the survey—explains what the survey was designed to do. To read that, click here.

In her second report Dr. Lewis gave us a summary of what chronic pain patients are saying in the survey – important data. Read the summary here. (Hint: chronic pain patients are feeling isolated and are looking for help.)

So for the rest of her report, read on:

What jumps out in these responses?

Healthcare experts are woefully under educated about chronic and complex diseases, pain in general, and resources within their communities. This lack of knowledge is evident in the progression of harms over time experienced by many respondents. The silos of care fail communication and care coordination, adding increased cost and burden to every sector of the system.

Nobody signed up for this sea change, nor were they consulted about solutions. There is no input, no functional appeal process, and thus no recourse at any level. Individual needs don’t matter. There is no seat at the design and implementation table.

Everyone is affected. Professionals, children, parents, students, laborers, healthcare workers, craftsmen, truck drivers, mothers of newborns. Our acute healthcare model fails to address the way in which people live over the life course. A one size fits all approach fails to account for differing experience, geography, and distribution of health resources.

People have tried everything that is available. Here is a list of what folks report they have tried to care for themselves.

Prayer is on this list.

When everything has failed, prayer is the last desk by the door and suicide begins to look like a very doable final solution.

We are still collecting. We want to hear from you no matter your experience or your role – health care workers, care partners, mental health clinicians, public safety officers, insurers, affected individuals. All voices will round out this activity and widen our understandings.

Results are raising as many questions as I have asked.

(Editor’s note—please read all three of the stories and, if you haven’t, also fill out the survey. When you’ve done all that (please), then provide a comment in our section so we can see what the chronic pain community is thinking. Please fill out that survey—ok I’ve mentioned that twice)

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Authored by: Ed Coghlan

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Dear Deborah,

I was really dismayed to read your story, and I am really sorry to hear that you are having such an awful time. Unfortunately your situation is not unique. What many “pain experts” fail to acknowledge is that chronic pain is a brain problem and that to treat the pain one needs to “re-train the brain”. See: https://www.youtube.com/watch?v=C_3phB93rvI

This sounds simple, but in practice is not that easy. We find that a comprehensive pain treatment programme (directed towards re-training/re-wiring your brain) comprising several elements can get great results comprising, amongst other therapies, Trans-Cranial Direct Current Stimulation (tDCS) (see: https://www.youtube.com/watch?v=7v0jhjy927w) and “Moscowitz Exercises” (featured in Norman Doidge’s famous ‘The Brain’s Way of Healing’, see: http://www.neuroplastix.com/ – they are just about to launch an Intro Course for patients – do get in touch with them if you like).

I am not sure where you are in the world, but perhaps with some “digging” you may be able to find somewhere close to home to help you. If there is anything else I can do to help, please don’t hesitate to get in touch. I wish you all the best.

With kind regards,

Daniel Lane BSc DC (UK) DACNB FFAAFN QEEG-D
Clinical Director, Perth Brain Centre

Perth Brain Centre,
Suite B2,
Attadale Business Centre,
550 Canning Highway,
Attadale,
Perth.
WA. 6156.

http://www.perthbraincentre.com.au

Deborah Rank

I’ve tried to comment, tell my story as you’ve asked, I’ve been a chronic pain patient for almost 20years and I was dropped by my Dr without any warning, now fighting with my insurance company who assigned me a “advocate ” who has done nothing towards finding me a pain management provider but keeps pushing me to get a mammogram. I don’t have any family history of breast cancer, but I have 5 file boxes of medical records about the surgical adhesions that are strangling my lower intestine and tearing the lining between the gut and muscle wall, pictures of the bruises from internal bleeding that it causes, along with everything that shows the effects on my Type 1 diabetes that I’ve had for 44 years. SOMEONE HELP ME FIGURE OUT WHERE TO GO. SUICIDE IS THE ONLY ANSWER THAT I SEE, BUT I’M HANGING ON AS BEST AS I CAN.

Terri Lewis PhD

The survey responses are being analyzed and prepared for a number of potential issues and policy audiences. Results will be summarized and prepared in a variety of formats to inform state and federal policy makers across public agencies. I am mapping the data by zip code and publishing drafts on these as maps on my twitter feed @tal7291.
To start I am assembling categorizing feedback on diagnoses, symptoms, pain characterizations; all the things your report that you have tried (worked, didn’t work); barriers to care; pharmacy experiences; insurance issues; treatment experience; step therapy; and suicide. I encourage parents, care partners, spouses and family members in any role; folks in the helping profession to respond.
This project falls into the category of patient-generated research; 80% of you have indicated that you would like to be invited into future research opportunities. People with chronic pain are usually left out of research activities – so I am preparing to place a new project (derived from this one) under an IRB (Institutional Review Board) so that we can really get a deeper dive in your experiences and impact more targeted policy audiences.
I am forever grateful to have your trust as we move this into the public space. If you are involved in regular advocacy and you want information about ongoing survey results for your state, please email me at tal7291@yahoo.com. I will de-identify and provide you with a state snapshot.

Uwe Rheinfrank

Our Big Government has went to far with its response to the “opiate crises”.
The knee jerk reaction in deniying needed medication to suffering pain patients, when in actuality it is the junkies dying from street drugs, is beyond cruel and inhumane. What is next? Denying food to the public because of America’s obesity crises? When legitimate patients are denied they don’t have any good alternative options. Myself I don’t know where to turn as I was already informed of a reduction in my script is eminent by my Dr. I Have Not abused or diverted my medications, never. What little quality of life I have left is going to be gone. That is my reward for serving this country proudly as a member of the armed forces , most of which was spent during the Cold War fighting Comunism. I feel that I wasted my life and physical health as it appears it has now manifested itself in this country. God help us all.

Terri James, this didn’t start under Trump, if you want too blame a President then put the blame where it belongs. I am a cpp that has lived with the cuts on my meds. It’s a terrible thing that is happening to people that live 24/7 in severe pain. My brother has to crawl because his legs shake so bad he doesn’t trust them. His Dr. cut his meds a lot now he just lays in bed and crawls to the toilet,tub and kitchen. He has to have my younger brother take off work once a month too load him in car and take him to the Dr. because his him and his wife is 77 and she has had hip replacement and can’t pick up on him. All the alphabet agency takes their orders then get drunk with power. Personally I think someone wants to make billionaires with their rehab clinics and don’t give a damn who they hurt to do it.

How do i take the survey? This pain patient feels like im living in a concentration camp. Nazi type doctors still sqeeze my broken tendons until i scream when i not look to see if my pain is real. How sadistic so many doctors.
My words dont count.

So thankful to hear that prayer is on the list! God CAN do more than Trump, “dr.” kolodney, and their followers put together! To all of my brothers and sisters who continue to live in chronic pain, may He continue to bless you❤ and give us the miracles so desperately needed.

Kris Aaron

A top executive made the decision that all doctors working for “her” practice (the largest medical practice in the state) would no longer be permitted to write opioid prescriptions for any reason.
he is not an MD. In fact, she has NO medical education!
But she IS an MBA. And that business degree qualifies her to forbid our doctors from helping us treat our pain. Proving once again that…
Healing is an art.
Medicine is a science.
Medical care is a business.
I guess we know which of those three choices describes the US.

Alessio Ventura

I was recently reduced from 75mcg Fentanyl transdermal patch to 10mg Oxycontin ER and from 20mg Oxycodone immediate release (IR) to 10mg Percocet. It happened in one visit after the new July 1 opiate laws. The cut was dramatic as 75mcg Fentanyl is equivalent to 120mg OC oral. The IR was a 50% cut, somewhat less than the fentanyl cut but dramatic nevertheless.

As a consequence, severe withdrawal set in; I wound up in the ER from severe dyhydration (from constant vomiting and diarhea) and malnutrition because I could not eat from the ever present nausea and vomiting. I spent 3 days in the hospital. If you hear that opiate withdrawal is “not life threatening”, PLEASE DO NOT LISTEN TO THAT. One of my kidneys stopped working temporarily due to the dehydration (myoglobin buildup) and I needed temporary dialysis. I was at risk of DEATH.

A month later I had a serious root canal in NJ (I am a Florida resident with a house in NJ), and I am a chronic pain patient. When you are force tampered, every little extra pain hurts. Well, the oral surgeon gave me Tyleno#3, but no pharmacy would fill it because they said, “You are already on stronger medicine.” I explained my situation, but of course they didn’t want to hear it. The Codeine likely would have made a difference, because different receptors are involved with opioid variances.

So I spent 3 nights in tooth agony, unable to treat it.

What in God’s name can I do about this? It is unbelievable what is going on in this Nanny State. These people are supposed to be caregivers, not my nannies. I don’t need them to “keep me safe”, I need them to allow me to be treated.

As I have written in recent articles here, I am on the verge of going to street drugs. My only recourse after this non-stop nightmare is simply to commit suicide. I am quickly reaching that point.

Gary Raymond

Thank you for a concise, accurate summary, Ed. Robert R. Redfield, MD, Director of the CDC, should imagine himself being tarred and feathered using hot tar. Then, imagine himself being unable to obtain effective analgesics using currently legal procedure. His son overdosed abusing criminally-obtained cocaine that was laced with fentanyl. The doctor vowed revenge on the country. So why does his son’s criminal behavior justify taking away my only chronic pain relief? Except for the genocide of the Native Americans, this opioid witch hunt is the most immoral and illogical action the United States of America has ever taken against the most weak of its own people.

susan

I think I filled out the survey. Was wondering if there are 2 surveys? MS and Pain Warrior. Thank-you

susan

One size does NOT fit all of us. suffering from pain. I think the DEA should re-thiink and consider the issues. Thank-you.

William

Surveys are fine but when are we going to get some action. Pain advocacy groups need to get on the TV shows and let the world know what the truth is. Without the public we can not win.

Jane Gill

I just left 6 tweets on FDA Dr. Scott Gottlieb’s site where it says “ Sunny day at the FDA” I Begged him to please read the National Pain Report! He is now getting ready to start a study he believes will show Naproxen will work just as well as “ opioids” I hate that term! I let him know I have had 3 stomach surgeries due to Naproxen! I just went through just 3 months of taking just Narco and was made to feel like a felon. I can not imagine the hell those of you deal with Everyday! I cry and pray and write Congress for you and have now tweeted to the FDA! All of you are in my prayers! Thank you to NPR.com for having this AWESOME and life saving site!

David Trout

The lack of education and gross misinterpretation of both the CDC Guidelines and DEA laws endangers is. Just as we must advocate for our own health needs with practitioners we must advocate to educate ourselves to enlighten practitioners on CDC & DEA truths. Patients should defend themselves against misinterpretations by carrying a simple helpful written reference that reflects key CDC quotes, I.e., quoting Dr. Debora Houry…”The guideline is a set of VOLUNTARY RECOMMENDATIONS intended to guide primary care providers as they work in consultation with their patients to address chronic pain. The guideline is NOT A RULE, REGULATION or LAW”. The written reference should also quote “Recommendation to taper or reduce dosage is only when patient harm outweighs patient benefit of opioid therapy”.

With regards to the DEA, I believe the director himself stated…”The DEA with not interfere with any legitimate prescription written for legitimate purposes”.

We can better defend ourselves, obtain appropriate services when our doctors, pharmacists and insurers are re-enlighten with simple undeniable truths. Perhaps a simple elaminated card that a patient can instantly refer to when faced with any instance where others incorrectly blame CDC/DEA, they face an involuntary taper or have their prescription dispensing refused.

I already successfully used this reference when a pharmacy refused to fill my opioid prescription that they had filled for previous 12 years and when my doctor intended to cut meds in half. The pharmacist seemed impressed with my knowledge, took a copy of my written quotes, a week later apologized and resumed filling my prescriptions. My doctor on the other hand became argumentative, inaccurately spewing risk of his licensure. Thankfully I was further armed with a Manila folder containing a copies of the CDC Guidelines, Prescribing Laws & Rules for Florida, Florida DEA law and dozens of articles published by the National Pain Report.

Nancy

Please explain what will be done with the survey results this time? How can this data get some attention and bring about change? Things continue to get worse. Where is help? The medical profession simply doedn’t care. The young doctors coming out of school have no empathy. There is no ER treatment. No where to turn for help.as a parent of a chronic pain patient, I feel hopeless.

Rosalind Rivera

This is indeed a serious problem. It makes me wonder that the lack of knowledge by so called pain management professionals is the reason why so many refuse to give pain medications to their patients and instead steer them to such alternatives as occupational therapy acupuncturists etc….
Rosalind Rivera
Lucerne Valley, Ca.

Linda N Coffman

Thank you for the links to the summary reports. I did the survey earlier this year, but this week experienced how my chronic pain affects the treatment of new acute pain. I had my chemo port removed, this surgery did leave an incision and pain for several days in my shoulder and chest. A piece of my port had broken off, so the next day I underwent a lasso procedure through my groin area. I contacted my wonderful pain doctor, who asked if I was given additional pain meds. I was given 15 pain pills, however trying to fill them even with both doctors permission was a huge dead end. The insurance said no, since I was already at the 90 MME CDC dose. This is for my chronic chemo induced neuropathic pain. The addition of more pain is not taken into account at all. Both a respected surgeon and a board certified pain doctor cannot decide what I need? This prolongs my recovery, lost work time, and the acute pain has triggered some flares of breakthrough pain. I feel horrible for families who have lost someone to an overdose. I myself have had to live with a family member who chose addiction over family. It does destroy lives, but taking away crucial medications and treatments is inhuman. If chemo made people high would they ban it from treating cancer? Sadly addicts just move to a new vice many times or use illegal substances that are deadly. Treating pain patients like addicts is a horrible disservice to the millions of us who work and live right beside you. As I sit on my bed today hurting from two surgical procedures with no addition pain meds, I see the horrific effects of a policy that punishes those in pain who follow all their doctor’s rules, not help or intervention for the addicts who will move to another substance. This will make people put off procedures and cause more long term health issues in the future. Good luck to all my fellow Pain Warriors! No one knows how it feels to walk in our shoes, and we would not wish that journey on our worst enemies.

Jill

They just announced on the news last night that the hospitals in Cleveland will no longer give opioid to patients after undergoing a C-section. They are claiming one out of three women get hooked in the drug. WTF! Are they serious? Wonder how this is going to go over. Now mainstream America is feeling the effects of the fake opioid crisis. These are the news announcements that make me believe this situation will not reverse itself in my lifetime. We need the survey results now more than ever!

Lindsey

Is this a new or second survey from the one we filled out months ago?
Also, the links on the next page of this where the survey is, do not work. (the ones to click on surgery monkey, etc)
I filled out one so far. Want sure if I needed to do this one also.

Many Thanks