What Is Happening to the Chronic Pain Patient? – Survey Results

What Is Happening to the Chronic Pain Patient? – Survey Results

By Ed Coghlan. 

Some three thousand people – most of them chronic pain patients – have responded to an online survey conducted by Terri Lewis, Ph.D. The results have been submitted to the FDA following the July public meeting for Patient-Focused Drug Development on Chronic Pain.

In her first report, Dr. Lewis talks about who responded:

People from across the country responded to the call (2988 as of September 7, 2018) to share their story and elevate their concerns to the Food and Drug Administration for the July 9 meeting. Here the topic was drug development for chronic pain. The majority of respondents were females (78.32%), Caucasian (95.32%), with education beyond the high school level (about 85%).  Respondents describe in detail the impact of loss of adequate pain care on activities of daily living, loss of employment, and encroachment on family obligations.  Those who self-identify in other categories (males, Hispanics, Native Americans, LQBTQ, Blacks) share compelling stories that reflect the current negative cultural identity imposed on those who are living with the experience of pain.  Reflected in these reports are stories of pride of survival, outrage, pain, shame, advocacy, and compromised identity.

Respondent age is distributed across age groups from less than 17 years (.37%) through more than 60 years of age (28.4%), with the highest number of responses in the 50-59 yr. age group (33.3%, n=997).  Eleven parents answered the survey on behalf of their children. Persons with chronic pain (95%) formed the largest response group, with care partners, family members, and helpers making up the difference. A number of health care workers responded who are persons coping with chronic and intractable pain even as they minister to their patients in pain.

The vast majority of individuals are persons with multiple chronic conditions that generate pain acquired as the result of progressive disease or catastrophic injuries that failed to heal.  A number of individuals have dealt with pain for the balance of their lives, dealing with disabilities present at birth that followed them into adulthood. Many individuals have chronic diseases that arise from multiple sources or affect multiple body systems, and many have 2,3,4,5,6 or more diagnoses for which they require complex care.  Some have survived cancer, and many have survived medical harm acquired from treatment within the health care system. A number of respondents are persons with complex conditions who are caring for loved ones far more compromised due to loss of care.

The motivation for some is very clear – they want the government to hear their story, to express their concerns for the current climate of care, or to share the story of a loved one lost to suicide as a result of the loss of effective palliation for chronic or intractable pain.   Sixty-seven persons described the conditions under which their loved made a decision to end their life due to change to care routine, a withdrawal of medications, or suspension of medical management supports for pain through physician abandonment or forced taper. Fourteen families describe in detail the conditions under which the substitutions or withdrawal of prescribed medications resulted in accidental death from prescribed medications (any prescription or over the counter) that were substituted for their normal and stable prescribing routine (step therapy or substitution of another class of medications). More than 190 individuals shared the active thought processes in play around their decision to end their own life through suicide if conditions of care don’t improve or a stable therapeutic routine is not restored to them.

Every state is represented in this data – from Florida with a high of 227 persons, to Hawaii with a response group of 3. Both rural and urban communities are reflected down to the zip code so that the data can be cross tabulated with other public data bases.

The Who, What and the Where of the data and who answered this survey can be seen below.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Authored by: Ed Coghlan

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Heidi

We need to inundate the DOJ with civil rights complaints! Will they listen? Who knows, but it sure couldn’t hurt!

Beth Stryker

My husband has a degenerate disease and has been taking pain medication for many years. He was recently denied his timed-released medication because of this whole opiod crisis. His medication was stopped abruptly and with no advanced warning.
Medication cannot be stopped abruptly because of the possible complications. That didn’t matter. Unfortunately, he is also of the 1% of the population that has an extremely high immunity to pain medication. He has been genetically tested for this at a very well known orthopedic hospital which was where he had a reverse shoulder replacement. The hospital, THE VERY PLACE THAT GENETICALLY TESTED HIM, denied him the pain relief that he required after surgery. HE WAS TREATED LIKE AN ADDICT!! These bureaucrats make decisions without knowing anything about the patients. Who are they? Who is the doctor that decided that my husband should live the rest of his life in pain? They never met. What about those people who clearly take their medications as prescribed? These people are being punished. If they, the insurance companies and who ever else they are, took the time, they would see that the prescriptions are from the same doctor, the same time of month, AND NO SHOPPING AROUND FOR DIFFERENT DOCTORS AND PHARMACIES.
How do we know when legislation has been amended for chronic pain patients AND NOT THE ADDICTS THAT CAUSED THIS?? Hey addict, no one twisted your arm. You made the conscious decision. Thank you!

KADY

Having seen many patients in a mental health clinic that also served addicts, I can tell you with certainty, that cutting back the pain medication of non-addicts created a crisis in their lives. Much pain, as shown progressively increasing by age in the survey (4,86,353,692,997,850) results from the inevitable “wear and tear” on the body over a lifetime of work.
I saw multiple people who were distressed and anxious as a result of being cut off their pain meds and referred to a pain management specialist which they (rightly) saw as an addiction doctor. The vast majority were people who had been taking the same dosage for several years without asking for any increases or abusing their prescriptions. They reported stories of being called into the doctor’s offices at random time to “check the number of pills in their pill bottles” or random urine tests to make sure they “weren’t selling their drugs”.
One elderly woman (68) I saw became suicidal when she was cut off cold turkey b/c the lab made a mistake and reported a false negative and accused of selling drugs. It took 3 weeks to rectify the mistake during which she was in constant pain, crying, and depressed, not to mention going through withdrawal. I think the indignity was worse than the pain. Another patient who was in her 40’s had been in a severe car accident and had multiple broken bones and torso casting. Her orthopedic doctor cut her pain meds in half after only 8 weeks and completely after 12 weeks. She was in extreme pain and couldn’t work in physical therapy any longer, becoming sedentary due to pain. But the worst indignity was when she went to the pharmacy with all the casting, stood in a long line, and then was loudly told that she must have a problem as she was asking for her pain meds “too early”. It was 1 day early and she was humiliated .
I really believe that people who are on the same dosage for years; function well in their daily lives; and only use medication to alleviate pain to sleep or work (including at home) should be left alone, as assessed by their primary physician. These folks do not report any euphoric effect from the meds. In my opinion, use of medications in this manner does not fit with the definition of addiction.

VEW

My Doctor stopped prescribing pain medication. Now what? I can’t take NSAIDS because of damaged kidneys due to taking them before pain medication. So I live in pain or take NSAIDS and die a terrible death from kidney failure. So sad and out of control.

ElizabethR

Wish I had known about this survey before it closed. I certainly would have responded.

Mike Daniels

Now that my doctor is no longer writing scripts for anyone, I have 3 choices. Suffer in pain, Get Heroin off the street or blow my brains out.
The only logical choice is the last one.

Sandy M.

Thank you Ed for porsting the results and to Dr. Lewis, a big thank you also for working on this project. I know it has to be a dificult task for you, with all you have going, however, I wish I could be as elequent and have the cognitive ability to be like you and many here who are also in dire chronic pain. I am unable to attend any rallies, just too far to travel.

I did complete the survey, it took me a long time to do so also. I was afraid if I stopped to lie down, I would have to start all over again. So, somehow I got thru it, although my thoughts about my pain were and are so hard to explain. I have several major health issues and I’m sure when I go back to my doctor in October, she is going to cut me back more on my pain medication.

I read somewhere that these same govt. officials (or whoever) are saying taking Xanax and an anticonvulsant ( I take, but not for epilepsy) cannot be done. So, many of us are going to be in another quandry because the few hours we get at night will be taken away from us also. That’s the only few hours I am able to NOT FEEL THE PAIN. I’m up most of the night and day. I’ve been using cold pacs for the pain of my already returned horrific back pain, which doesn’t give much relief; my Central Pain that is just unbelievable constant pain 24/7 from my hemorrhagic stroke I suffered in the thalamus area of my brain.

The Scoliosis I had was progressing so fast, and after turning down the surgery 3 times because of the fear so many I knew who had unsuccessful back surgeries told me not to do it, I was so bent over to the right from Scoliosis, I was hurting and suffering so miserably, along with the pain condition from the thalamic hemorrhage, and the spinal surgeon who I knew was a very well known and excellent surgeon told me if I didn’t have the spinal surgery I would end up in a wheel chair or paralyzed, so I went thru for 9 hours of surgery because of my deformed back, and the many procedures they had to perform on my back. I still had pain, it didn’t magically disappear, but now 5 years later, I can no longer walk, and the pain is back as bad…..with a passion, x-rays indicating there is still some Scoliosis, along with the normal aging back problems we all face and without going into all the specifics, because I understand we are all here because of these situations.

Now, with my one breakthru pain medication being taken away from me, then my Xanax, where, who can we turn to? God Bless All of You!

FROM today’s NORML newsletter:
“Thursday, 03 May 2018

Seniors Using Cannabis
Emeryville, CA: Adults age 50 and older are far more likely to consume cannabis today than they were decades ago, according to population use data published in the journal Addiction.

Investigators with the Alcohol Research Group assessed trends in marijuana use between the years 1984 and 2015. Authors reported that, compared with older Americans 30 years ago, older respondents today are some 20 times more likely to acknowledge using cannabis.

“We found that rates of use among older groups increased quite significantly since the 1980s, especially for men in their fifties and sixties,” the study’s lead author stated in a press release. Their finding is consistent with those of other studies reporting upticks in cannabis use by seniors.

By contrast, respondents between the ages of 18 to 49 reported using cannabis at rates that are similar to those in the 1980s.

Separate data presented this week at the annual meeting of the American Geriatrics Society finds that as many as 65 percent of older adults reduce their use of prescription painkillers after initiating medical cannabis therapy – a finding that is consistent with those of numerous other studies assessing marijuana substitution patterns in various patient populations.”

For more information, contact Paul Armentano, NORML Deputy Director, at: paul@norml.org.

Carol Adams

I want to know why the addiction specialists have stuck their noses into an area that is not their specialty. If they were good at what they do they would realize that addicts lie. They lie and manipulate everything so they can get their fix. It’s easier to say they became addicted to heroin by blaming it on a doctor giving them pain medicine that “they didn’t know was addictive or dangerous”, than admitting they started with alcohol and someone else giving them a pill, or taking someone else’s prescription. Medscape just had an article on suicide in the chronic pain community and an addiction doctor keeps blaming doctors for writing for high doses of opiates for acute pain, and has a study stating that the risk of addiction increases after 8 days of taking these medications due to chemical changes in the brain.
How about citing the brain chemical changes that happen with chronic pain? I’m tired of addiction specialists telling my pain management doctor that he doesn’t know how to treat me and my condition.
We need more of our pain management doctors to stand with us, for them to be in contact with our legislators and educate them on how they TRAINED to treat patients in pain. How do we get these doctors to help themselves so that they can help us?

Connie Woods

Let’s stop the suffering

Heidi

Where can we see more results of this survey?

Tabitha

Chronic Pain Patients Protection Act NOW!

My hat is off to Dr. Lewis, NPR and to all those who participated in this most important survey study. Even though Terri has had a lot on her plate, she still did an outstanding job collecting and analyzing this data that will hopefully one day benefit the chronic pain community.

Cindy Deim

I have the same question others did. So now what. Will this change anything?

Kris Aaron

In response to Gretchen, who blames drug addicts for the loss of our opiate prescriptions: Drug addicts are not using prescription opiates because they’re not available at any price. They’re taking illegally manufactured (imported) fentanyl and heroin. Fewer than 2 percent of pain patients overdose on their opiate prescriptions; the vast majority of the deaths are and have been caused by illegal drugs.
The government wants us to believe addicts are to blame for the loss of our opiate prescriptions, but the true cause is the Drug Enforcement Administration’s inability to reduce the flood of illegal drugs pouring into the US from overseas. All addicts are someone’s child; somewhere, there’s a grieving parent who has lost their son or daughter to illegal drugs.
Thanks to our government and federal law enforcement policies, pain patients who have lost their opiate prescriptions are being forced to choose between one of three options: ‘Live’ with the agony, try self-medicating with fentanyl or heroin and hope we won’t overdose, or commit suicide.
The government’s use of incorrect statistics and the Department of Justice’s approach to pain treatment (Attorney General Jeff Sessions insists we should all be like Marines and “suck it up”) are responsible for the current war on pain patients. The DEA has decided their agents know more about opiate prescribing than our doctors, and has gone to extremes to terrify physicians.
Blaming drug addicts for the loss of our prescriptions won’t help us — the problem is caused by government interference and politicians’ refusal to see how restricting prescriptions and curtailing opiate production is causing unbelievable misery and suffering.
Alcohol prohibition was a resounding failure. The “war on drugs” is an even bigger disaster. We should have learned by now that it’s simply impossible to stop people from drinking and using opiates for pleasure. As a pain patient, I’m convinced that addiction is less of a horror than a lifetime of uncontrolled chronic pain.
Let the addicts have their drugs, and let those of us with broken bodies have sufficient opiates to control the pain we’re forced to live with every day!

Hayden

I love this country and I love people. I gave 14 years of public service as a volunteer firefighter because it was a way I could help those that needed emergency help. Where are those that are supposed to be the “experts” in health care and why if “they” experience no pain are they qualified to pass sentence on those of us that are. My records for 23 years and I won’t bore with the health issues indicate that I led a FAR more active and prosperous life with a dosage of opiate medication that now exceeds what is “allowed” by the DEA….oh excuse me, the CDC, from a dosage of opiate medication as the last, and I really mean the last effective way to manage pain that no human being could be expected to endure constantly until death do us part.

Annette Merkley

Thanks so much for giving the results of the survey…wish more had responded but those numbers are pretty good. Now…will this inhumane government listen to these accounts of pain patients that are suffering because of these new regulations and change their policies or will they just continue to ignore us!??

cindy

Gretchen – I found the survey and completed it about a week ago. It’s still somewhere in the NPR. But it took a LONG time and a lot of effort.

Drucella Williams

Thè surveý was very good, but I just couldn’t fill it out. Anxiety is high with added pain and stress. Imagine I’m not the only one who struggled with it…..Thanks for posting that letter, we were represented well.

jon mchann

Thank you for posting. The medical profession needs to wake up!!

Alex

Thank you for making this presentation. The journey as a person with multiple diagnosis and permanent intractable chronic pain is hard enough. Our government in their typical inefective style of trying to address one problem – opioid and other illegal drug abuse – has effectively left thousands of pain patients in jeapordy. They (government) need to address the difference of managed opioid medication for pain use, and the habitual use of unregulated illegal substanced. We hurt we’re not junkies!

William Dorn

This proves that we are not the stupid low lives that the government portrays us as. We could be working paying taxes and being productive citizens. We could be caring for our families the way we want to. Why does our government not want these things for 100 million of its citizens. Why isn’t the media reporting the truth about this so called crisis. Please get this survey into the hands of congress and all major news outlets. Maybe someone will hear our cries.9

Barely Here

You tell me that what you don’t know can hurt me!

I will tell you what they dont know about me and what they are choosing to do with me is hurting me …

A person can only take so much pain and when they take away 1/2 of your pain medication in a period of two months … I want you to know I’m barely holding on and I don’t know how long I can do that!

I thought I had an understanding pain specialist until 3 months ago when they told me they had to reduce my pain medication because of house bill 12 … which when I read had nothing to do with me! When I brought this up with my pain doctor theye refused to even speak with me about it! I left the office with less pain medication than I did the month before!
With multiple problems I can’t see me going on much longer. It is not that this is not living although it isn’t! My pain is just to much for me to live with!

I am sure if there is another side I will be meeting others there soon!

Yes I have used a fake address!
Don’t think for a minute that I will let you Baker act me again where I went totally untreated for my pain … not once but twice!

Alice Carroll

As I read this I’m wondering why on earth the CDC and DEA are targeting this group of people and their physicians as if they are the cause of the opioid OD problem. It is clear this is not the case. Why are they ignoring their own statistics which show black market drugs and illicit Fentanyl are the culprits? Richard A. “Red” Lawhern, Ph.D. of the Alliance for the Treatment of Intractable Pain has written to the CDC numerous times with informational charts and graphs to support this and he is ignored. Just what is going on?

Gretchen

Wish I had seen this survey would have taken it I am a 57 year old female from Ohio I am disabled and pain managed I believe that many more pain paitients would have done this survey the 3000 people who did are only the tip of the ice burg but a lot of us are depleting every day too the fact we don’t always feel well enough too respond for me I feel like It’s just a matter of time before I go a lot sooner then I need too I used too have few ok days now it is dispare on a daily bases I sit on death row just waiting for the inevitable too take place as a prisoner in my own body Thank You too all who are trying too help and get it it’s nice too know some care I’ve been lied too lied about humiliated laugh at called names out right denied any care at all at some points in this dangerous game I’ve ended up in the emergency room twice for bad reactions too drug that were tried instead of what works and once for denial of no care bullied threatened lost all rights too any privacy of hippa rights even in the Drs office of pain managment let alone the people in the legislative end of this the DEA FDA CDC and our federal government unqualified too see our records I’m sure they still enjoy the right too privacy that they have taken away from us I am a lab Rat and a Genie Pig the mental abuse is something I thought would never happen in what used too be America and is enough too.kill also stress will kill So thank You too the know it all in the category I mentioned above I also want too Thank the selfish drug addicts for their part in this our blood is on your hands too I hope you live long enough for you too be blaimed for something you did not do because of your selfishness just like you have done too us this is just another trend by the control freaks and know it alls too get their way at any cost and my life has been way under valued I am a Christian and Gods rath will not be kind too all that have persecuted us so I beg you too do unto others as you would want done too you God bless all

Lisa Feher

You work as long as you can in pain that you’re out of pain because of medications and then when it’s time to retire oh no no more you’re going to live out your life in pain

We all know what’s happened and what’s happening to the chronic pain patient, the question is what’s going to be done to fix it! Now there’s a story I’d like to hear…

Anthony Harding

Florida has horrible health care and is filled with old people, and has the highest rehab and sober houses in the country. I live in Port saint Lucie and with in a 5 mile radius there are 19 rehash and 37 Sober houses, and Port saint Lucie is a small nothing town. When health care is so bad here people are gonna suffer. I’ve have known 6 people that got back surgery and 4 died from the surgery that is horrible odds. Hospitals have all these nurses and doctors that just walk around in circles at ERs, one nurse I actually watched her check her Fit bit as she did lap after lap of doing nothing but just walking. Or the doctors and nurses just touch each other and flirt all day, it’s a hospital not a bar or a dating place. I miss when my grandfather was alive because he was a Navy doctor and I go real health care. Some ERs here charge you cash only before you can be seen in an emergency situation, my daughter died because of this. And I was told by lawyer sorry I can’t do nothing because you are white, if you were black we would have a case but since you are white we don’t have a case. Why is rasicit laws preventing poor whites from getting proper health care? But lacy just came from Haiti get full health benefits and zero cost to her? Not counting the food stamps and a many other percs, what is happening to America?? When did we become a country were we hate our own citizens? We will walk all over America citizens and leave them to die just to help the illegal immigrant. It’s no wonder other countries look at us and laugh at how pathetic and weak of a country we are.

JULIA GILLESPIE

Thank you Ed, for publishing the results of the survey. It answered many of the questions I pondered knowing it closed on Monday.