What is Largest Chronic Pain Patient Survey Showing?

What is Largest Chronic Pain Patient Survey Showing?

For the last several months, The National Pain Report has been promoting the efforts of Terri Lewis’ to calculate the impact of changes in chronic pain treatment on the patient population. Nearly 4,000 people have filled out the survey. If you haven’t you can do by clicking here.

Here’s more on what the survey is showing:

Seventy percent (70%) report that their health care has either worsened or they have lost support entirely. Twenty-five (25%) of individuals have lost access to a primary care provider. Forty percent (40%) lack access to specialty care for disease management. Of those who have lost access to care management, 63% report that the burden of self-managing their illness has increased, reliance on over the counter medications has increased with little effect, feelings of hopelessness have increased, and family relations are excessively strained. Many express concern about the long term use of over the counter analgesics and the apparent disregard of potential risks by their physicians.

Forty percent (40%) are unhappy with their insurance carrier for reasons that are unique, complex, and reflect the various differences in plan implementation across the states. This, together with comments about integration with financial resources and public benefits programs requires close scrutiny – I am still working to understand the influence of external factors on this area of responses. It appears that the loss of economic basis imposed by the onset of chronic disease imposes significant limitations on resources to manage care. Roughly 70% of respondents are living at or near poverty levels. This limitations on choices and increases dependence on systems of care that are not operating consistently or optimally across the states.

Suicidal ideation and action are ever present in the pain community. Two hundred sixty-seven (267) persons thoughtfully reflect upon their suicide stories; 89 persons shared the story of a friend or family member who ended their life, while the balance of respondents describe the conditions under which they will take action to end their life. I have not yet teased out the factors that correlate to respondent characteristics. Many comments reflect loss of care support, concern for burden on care partners, and running out of energy and personal resources for this difficult race.

Thirty-five (35%) of respondents have changed pharmacies one or more times in the last two years – either because of pharmacy plan changes to formularies, out of stock issues, errors, or because the pharmacy stopped stocked necessary medications. Limitations of mobility, transportation, and impact of disability require reliance on friends or family to handle filling of scripts. The pharmacy crawl causes extra stressors as many report feeling like they are treated like criminals upon presentation of a legitimate prescription.

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Authored by: Terri A Lewis, PhD.

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susan

I filled out the survey many months ago. There’s a vast majority of people who haven’t done so. I live in Florida and would like to know about the laws here. I use one pharmacy and they know me. I also signed a contract with my PCP and neurological team. Thank-you. I really want to know about Florida.

Douglas D

There were a couple points that seem important to both sides, and believe me when I say I’ve been harmed by the CDC guidelines and doctors forced to apply them. I’ve been in bed 2 years now and my back is black and blue – but mindless ranting isn’t going to convince people there’s a legitimate need to relieve pain. It makes people sound desperate and “addicted” if they don’t know the reality of the pain patient – they believe it justifies all unintended harm because hey, “why feed an “addict””. Addiction is a lifestyle the pain patient does not participate in. They’re home in bed, not running the streets. Education, information – and directly countering every article and questionnaire that pops up against the condition and rights of sick and injured patients is crucial. If PROP or anyone else can circulate a petition, why don’t we do the same to respectfully show our side and give people facts to make an educated decision? Propaganda is a powerful tool, but so is countering that information with real facts, personal experiences and nationally impacted statistics, etc. We can’t do it by ourselves or with only a few websites and mailers. Things will not change until we gain attention from the media and politicians understand that the illicit world of drug abuse is where people are dying. It’s rarely been affected or added to by the legitimate millions of pain patients who just want to get better. I can make a petition if no one with more talent is willing. Who will circulate it – the pain patient cannot stand in his own defense when his very state of mind is in question, and that’s why we need outside affiliates to take notice and understand the facts, conditions, and harm being done across the country as a direct result of the CDC “guidelines” and DEA bullying. Doctors are afraid, families are exhausted, and the real pain patients are left feeling alone and without hope. Endless letters to our senators, congress, and actively pursuing judiciary justice is needed.

TSHEIDLS

It is all nonsense , Insurance companies got together and probably govt officials as soon as Obama care came into play and they looked at where they are spending a lot of money , one of those areas was pain management so they manufactured a crisis when the numbers just do not add up and the CDC has been busted lying about them , FAR MORE PEOPLE die everyday from tobacco and alcohol . the numbers are right there . there is no CRISIS , but the media has said it enough as to form and shape the hearts and minds and of course the politicians then get into a competition, backed by false data and trying to not admit that govt run health care is a disaster from the get go . We have these elected officials looking for an easy headline , “I have passed a law preventing anyone from receiving pain pills ” We are suing Purdue , lol. It is a joke but let me tell you , anyone who is in realy pain isn’t laughing , we cringe are the stereo type tightens , they have likened pain patients to heroin addicts when we all know addicts are born , not made , but somehow those wise addiction specialists who taught us this now say that somehow think prescribing a pain pill to someone with a malformed spine , or dying from cancer is going to turn them into a raging heroin addict , IT IS JUST NOT HOW IT WORKS. , They are liars and they fill their pockets now with people getting hooked on suboxone and detox programs . All the while without even the slightest regard for Pain Patients , where is teh “CHRONIC PAIN PATIENTS PROTECTION ACT” to ensure people in real verifiable pain are not impeded upon ? All their efforts to take away people in pain , pain meds has yielded NOTHING . The issue is still there with a small number of people overdosing on heroin and fetenayl , still no where near the number of people who are dying from alcohol and tobacco , and now all these supposed pain patients who were supposedly diverting their pain meds are without their meds , suffering. SICKENING

Lynne Hall

While it’s good that a large # of people took the survey. There were many that said what’s the point. They have taken other surveys in thee past and saw their time as wasted and falling on deaf ears. Most simple believed it was just a ploy at appeasing a flawed system and nothing would come of it. Coupe that with the endless commercials on drug abuse.
No media attention was given to this pain report and most of us stumbled upon it. Far to many during the government shutdown that gave us the extra time to take to social media and tell others. I would like for you to contact the participants as you did to thank us, and ask how they found out about the National Pain Survey at all. Quoted as being the largest survey conducted. What a laugh, as people are still saying, why do wr never hear about these things until they are over.
Basically it’s just like losing your doctor and trying to explain to the new pain management system your medical condition and them not wanting to hear it or see proof.
I have a brief case full of dociments on my health. My full chart measures around 6 to 8 inches, but has been dindled down to around 2 inches thick. Thank God I have been seeing the doctor who has been thru the worse for over 35 years, and remembers what he actually had to do to me.
I have tried to show this information over and over as the PAs fail their test and another is brought in. The first 1 I had for 3 visits, actually told me you’re screwed. You will have to live
with it.
I have scar tissue ARD, my last appointmen the PA informed me they hadme down as Acute Respiratory Distress and laughed.
Being forcible removed from a licenced surgeon and having to sit in front of a PA who passed a test for the job, not a qualified medical doctor is demoralizing.
My mom takes me and is present for these appointments. From the beginning I was tapered against my will and have never been allowed to see the actual doctor who writes my scripts.
Unable to continue. Post limied.

Patti

I did it, finally. Thank you for this comprehensive questionnaire.

S. Dixon

4K is a great response, but it’s not near the figure reflecting how many pain patients there are. The majority of us are un or under medicated now. Sadly, suicide numbers among us will continue to grow, unless the drug enforcement agencies get out of the medical business. Many people have made great points on why we are being targeted. I would love some guidance on what we can do to stop this madness.

Kirby Accardo

The survey results so far are staggering. How can 70% of people who are in or near poverty expect to fight some of the wealthiest people in our nation, the legislators. In addition, too many people are paying for services from doctors and pharmacists who are denying them basic human care. How is this not a Civil Rights Violation? We need the ACLU or some Civil Rights organization to help get the message out.

Michael Recchia

I found this article which addresses how the new tendency of physicians to withold opioid treatment can further worsen a patient’s condition:

https://47-percentors.com/2018/11/22/opioid-hysteria-and-physician-credibility/

Frattini Mark A

When my physician stopped writing all my opiates I saved enough to kill myself. I told my wife my plan and told her not to bother trying to find them. I also tried to hand myself in my garage. My doctor refused to speak to me and had the nurses tell me after writing my opiates for 10 years. I told them I would commit suicide because I cannot live with this pain. I was expressing this to my other doctor who has always refused to write opiates and he recommended Kratom. I bought some and put it in a drawer and forgot about it. When all my medication ran out ( fentanyl patch 75mcg, morphine 15mg and Tramadol 50mg) I went through 2 and 1/2 weeks of the most horrific time anyone should have to go through. So one morning after having 2 grandmal seizures and dedicated all over my bed I decided no more. I will not live one more day like this. Then I remembered about the Kratom. I took 1/2 teaspoon which is 1 gram ( the starting dose) hoping this would just kill me. So I mixed it in my coffee and drank it. A weird thing happened in 30 minutes. I had no pain in my legs. Within an hour I was completely pain free and my withdrawals stopped 100%. Since then I use Kratom every 4 hours and am pain free for the most part. I will never subject myself to another physician who is technically a legal dope dealer who controls our life. Please give this a try if you can. That day I took Kratom for the first time, I took my dogs for a walk cleaned the house and cooked dinner. The best part is it also gives you energy and you don’t feel high or buzzed. You feel good like you did before the disease. I have been in and out of the hospital and emergency room for 10 years. I started Kratom 3 months now and have not been to the hospital since. My quality of life is not perfect be it’s improved 75%. I actuallly now have good days.

Laurie

People sure seem to love to blame and hurt what they don’t understand or can make $$$ off of, don’t they?
Most of the time they make us worse with their medical intervention and now, won’t even give us the only thing that can help make life bearable.
What a country!

Kelly Strnad

I took the survey and didn’t see questions about suicide either. I know that I have been faced with involuntary reduction in my pain meds and have resolved to use my last pills to commit suicide if necessary. I don’t want to be a burden on my husband for the rest of his life. I also don’t want to use all of his savings chasing enough relief to lay in bed all day.

Alessio Ventura

Here is the forementioned article from “Pharmacy Times”:

https://www.pharmacytimes.com/contributor/brittany-myers-pharmd/2018/07/how-lucemrya-reduces-opioid-withdrawal-symptoms

Notice in particular reference number 1, which is CDC data. It completely contradicts the author’s claim.

Alessio Ventura

Here is a good example of how the anti-opioid crowd conflates data to make their erroneous points. In this article from “Pharmacy Times”, the author makes an astounding claim that 200,000 deaths/year occur from “prescription opioids”. The author references CDC data to make the point. However, when you look at the CDC data, they say that 218,000 deaths have occurred from 1999 to 2017. That amounts to 218,000 divided by 18 years, which equals 12,111 deaths per year ON AVERAGE.

Folks, 15,000 people die every year from NSAIDS, like Ibuprofen, Naproxen, and others, and 100,000 wind up in the ER!

88,000 die every year from LEGAL ALCOHOL!

40,000 die every year from ANTI-DEPRESSANTS!

Several thousands die every year from Acetometaphine (Tylonol) because of LIVER DAMAGE!

Over 1,000,000 people die every year from SUGAR (Diabetes)!

So we have to ask ourselves, why are LEGAL OPIOIDS used for LEGITIMATE MEDICAL USE under MORE SCRUTINY than any medicine on earth?!

The media and politicians love to CONFLATE THE DATA, mixing ILLIGAL OPIOID RELATED DEATHS with LEGAL OPIATES! This is why we are being punished, we pain patients; because the NANNY STATERS are blaming US for the ILLEGAL OPIOID deaths.

We are EASY TARGETS. It is too difficult to control our borders, to go after drug dealers and kingpins. Recently even conservative politicians supported a drug dealer clemency program as part of their “prison reform” program. Pain patients are feeling the brunt of our government’s unwillingness to deal with the true cause of the so-called “opioid crisis”.

At the same time, highway fatalities keep increasing as medical THC becomes more widely accepted. I have tried this route, and even if I take the slightest THC in comination with CBD, I become extremely drousy and paranoid. No wonder highway car crashes are increasing.

As I said in my previous post, I am PISSED OFF at the FORCED TAPERS. I am sick of shaking in fear while presnting a legal script.

Steve

I am 66 years of age. Been fighting spinal degeneration for 40 years. I have tried EVERYTHING you can name, CBD Oil, acupuncture, low THC pot, Tens units, massage, epidurals, etc. etc…. and finally after 4 major back surgeries, over 40 years, a multi-level disc fusion from L-4/5 up to my thoracic area, 5 carbon cages, including 2 long titanium rods, finger thick screws and a lot of permanently firing damaged nerves. My opioids (the ONLY thing to ever MASK my PAIN) have been drastically reduced and as I do not want to drink alcohol for self-medication, have nowhere to go. My Doctor just shrugs, my local/state health department won’t return my calls. I am afraid to, and will not end my life. I wish, passionately, all my pain on a few of these “decision” makers that are ruining my last years of life on this earth. They should be forced to read this message to them from me. Good luck to that.
Steve

It’s an excellent survey but One thing it’s left out of this survey undertreated pain after any type of surgery. I have spoken to many people who have had minor surgeries to major surgeries to repair a broken bones . They said they did not receive enough pain medication & their pain medication was at a low dose that it did not adequately treat the pain so it was under treated. I myself am supposed to have two different types of surgery. & I went over this w / surgeon about how is he going to control my pain after surgery he went from very friendly to not friendly. He said only 10 mg 3x day. And he told me what the laws were for prescribing & I had to sign that he went over this with me .& paper wrk said that if I failed Physical Therapy that they would not refill a pain Med prescription. Again coerced to met a standard to receive pain control. My surgery arthoscopy hip tear & few other things. But from the people that I spoke to that had surgeries they only got one script & was refused additional refills. & said Physical Therapy was unbearable w/o pain meds. They were told by the doctors nurses to take Tylenol or Ibuprofen. I don’t kn if i will go thru with surgery until my hips need replaced. Maybe by then our country has gained some common sense in pain control. I am just afraid to endure more pain than i already suffering from.

Alessio Ventura

“The Opioid Crisis” has become a political rallying cry and a popular media ratings catch phrase.

In the mean time, even though 99% of the opioid issue is because of illegal drugs, mainly coming in through our borders, the pain patient has become the easy political target.

I was force tapered from 75mcg Fentany patch, equivalent to 120mg oxycodone, down to 10mg Oxycontin extended release. Because of the constant vomiting and diarhea, not to mention the debilitating fatigue, I wound up in the ER and in an extended hopital stay for dehydration, malnutrition, and severe anemia. That was no joke, and I am SO PISSED.

The pain doctors then adjusted it to 20mg ER, and then a month later, attempted to go down to 10mg again. This time, the pharmacist questioned why I was bouncing down, then up, then down, and I had to explain it in front of a bunch of customers, so even though my insurance company was willing to provide a “Prior Authorization”, the pharmacist did not want to fill it because of the “bouncing up and down”, no matter what the doctor said.

The over regulation of opiates is making a HELL ON EARTH for pain patients. Physicians are scared to death to prescribe it, pharmacists have all kinds of excuses not to fill it, and more often than not, the pharmacies don’t have it and are unwilling to order it. So here we are, wrything in severe intractable pain, going into forced withdrawal, thinking every day about suicide. Life has become truly unbearable.

I used to discourage pain patients from going to street drugs, but given this Nanny State over regulation, where systems like ISTOP, PMP, and pharmacy’s systems, you could get a pill on Mars and they will catch you and scold you. So we have two choices now (1) Suicide (2) Street drugs. I am going to (2) before I go to (1), but (1) is just around the corner.

The world has gone mad over opioids, but in the wrong direction. Medical marijuana doeesn’t help, it just makes me paranoid as hell.

KBecker

Thank you!

Holly

Thank you Terri for all that you do.

I am so very tired. I have no life anymore. My marriage is not what it used to be. I feel like a burden. I feel I am at fault. I cry all the time. I need someone to find out what is going on with new symptoms. But I trust no Dr. anymore. Plus I am too tired. May they rot in hell for doing this to us!

I believe your low turnout is because the most severe of us in the CPP community are dead or paralized in bed because the elite see us as use less eaters.

Thank you Terri, Because very soon there will be none of us left we do not have time to beat around the bush. I did not see the question are considering your suicide due a lack now of treatment for your severe pain ? Too blunt? I dont think so because that is exactly where most are or will be at that point soon! I know many think about it continually and regretably already have. Another carcase they can point at and say look, they had a drug problem. Right! A lack of drugs!

I have been greatly impacted by this crisis. I’ve spent so much money jumping between hoops in pain management. Although I was on pain meds 15 years with no abuse or misuse for an incurable disease. I have to go to many alterintives that do not help in order to get less than a quarter of the pain meds I was on. Every week I pay out of pocket 200.00 dollars for therapy that does nothing for my pain. My pain Doctor says I know they do not help you but I have to show I’m sending you to alternatives so I do not get in trouble. I’m in dept with credit cards and my credit is ruined. I will not be able to charge any more in two weeks. I have no idea what to do. I’m so stressed out and know it’s making my pain worse! I’m disabled and live off a very small SSDI check. How is it ok to make cpp already struggling do these alternatives that do nothing for us .? Seems there is so much drama in our Country no one is listing. Yes I have a final back up plan like many other cpp’s. Why can ppl not see that this is pure genocide?

Today they said they could not or would not fill my prescription because they did not get the shipment. I have had two MRI’s and full body X-rays showing how going WITHOUT the medicine I had been prescribed for over thirty-two years HAS caused my disease to spread to my heart eating away two holes in the valves and spreading down to the middle of my spine! When it had been stationary in my neck and hip -not spreading for over 32 years -IN ONE year my disease has spread and keeps spreading- from all the stress of having to jump through so many loops just to get half the dose for my monthly medicine. But, I was even trying hard to deal with it UNTIL TODAY when they said they could not fill my legitimate prescription from a legitimate pain clinic, because their shipment was not in. The Pain and stress of all this is causing my disease to get so much worse,my body cannot go through the pain of not getting the pain medication again-it is crippling me. I have a incurable disease -what is being done to me cannot be fixed I feel hopeless and scared I do not want to live if I have to watch myself become a total cripple from this disease spreading thru my whole body WHY ARE THEY TREATING PAIN PATIENTS LIKE CRIMINALS ? all I did was be born with a genetic bone disease that has no cure, it was being managed with pain medicine! I can not stop crying from the pain of being treated less than human.In 1993, at Queens Hospital after undertaking my third neck surgery, that had broke before I was able to leave the hospital, I was diagnosed with a very rare genetic bone disease Alkaptonuria/Ochronosis where my bones turn black, brittle and all the cartilage and disc are eaten away from between my joints and vertebra. There is no treatment in which to make it stop. I have my bones grinding against each other, in my neck with this disease progressively stripping away all the cartilage and disc on down my spine= along with my hip,and valves to my heart

Kelly

I too am in agonizing pain every single second I breath this America the land of the free air, I don’t understand the saying,” first do no harm” someone needs to stop making medical “professionsls” say first things as they are now not telling the truth. my family is so scared that i won’t live another day that 3 of them have quit their tax paying jobs and another 3 being ready to follow suite just to watch over me as I am the glue that keeps this family functioning. please someone has to come up with a reasonable answer here!! we are dying to know what’s next!!

This survey has just reinforced everything I already knew. I’m depressed, tired, in pain day in and day out. I have no life to look forward too.
I do appreciate Terri Lewis for doing the survey and pray that things change for th better soon.

Martha

Can you please post the deadline again? I am trying to get 2 more people to complete this survey.
BTW…I returned my survey…only to experience HUGE problems with my insurance company denying one of my pain meds ($$$) the DAY AFTER I returned the durvey!!! They caused my PCP to interrupt her day to have yet another Peer to Peer call. My RX was delayed by 15 days.

Deana McKenzie

Where’s the “crisis “ in this country?? There has to be some kind of plan to address this huge inhuman treatment of pain for these people! I was an RN when I could work. Fibromyalgia and other diseases changed my life forever! I was discharged from a pain management Dr’s practice three years ago for having 28 n of THC in my urinalysis for using hemp CBD OIL at the time. My pain was inadequately treated so I took the oil for pain. Despite my physical evidence of severe chronic pain they discharged me. I felt very uncomfortable every visit because of their overshadowing paranoias! In MD medical cannabis is legal and I go to a dispensary for my medicine. I meet people every visit who are now being referred for cannabis from the same Dr’s office of pain management! I am happy and grateful to have a safer way to reduce my pain than the opioids.
Some people still need opioids for pain and the hysteria surrounding them are causing people to take their own lives and suffer daily through life! Insurance companies should be paying for alternative pain treatments like acupuncture, massage and some memberships to gyms to keep people ambulatory! The government needs to legalize cannabis, or at least
medical cannabis. I’m praying for all of you whose pain is under treated!