Who are ‘You People’ Anyway?

Who are ‘You People’ Anyway?

By Terri Lewis Ph.D.

Editor’s Note: When the National Pain Report helped promote Dr. Lewis’ survey of chronic pain patients submitted to the FDA in advance of Monday’s Public Meeting on Patient-Focused Drug Development for Chronic Pain, we asked her to provide a quick summary of who responded and what they said.

A total of 1687 persons responded to this survey tool.  The majority of respondents are women (80%), men came in at (19.5%), with the balance reporting as ‘do not wish to declare or other gender’ (.5%).  The vast majority are persons with chronic pain (95%), care partners to someone with chronic pain (1%), a family member of a person with chronic pain (3%), or persons who reported as serving in a helping role (friend, neighbor, health care provider .6%).  A number of persons revealed that they are dealing with chronic pain while care giving for another person with chronic pain.  Some reported serving multiple roles as person with chronic pain and health professional.   

Among respondents, more than 80% are persons aged 40 and above – which places them in a position to be concerned about their loss of prime earning years and career progression.  The level of education ranges from high school/GED (14%), some college (27%), community college/trade school (22%), Master’s degree (16%), Doctoral degree (5%), other (4%). Some are unable to work (16%), some are working part or full time (28%), and the balance are on various forms of disability (VA, SSDI, long term disability).  Extracted occupational titles include professor, registered nurse, doctor, truck driver, teacher, public civil employee, scientist, and more). The cost of care is a pronounced and increasing problem – 35% report that health care costs consume up to 25% of their monthly household income; 21% report that 50% of their income is consumed by healthcare costs; and the balance report that 75% or more of their household income is consumed by healthcare costs related to pain support. For some, the cost of care has become so much of a burden that they are foregoing necessary care in favor of no care or alternatives that include OTCs, adjunctives, and ‘hope for the best.’  To be sure, many have attempted Tai Chi, mindfulness, and cognitive behavioral therapies only to find that it has accomplished nothing for the management of their Avascular Necrosis or Lupus.

The Center for Medicare Services (CMS) tracks multiple comorbidities through Medicare billing claims data and reports on the top 20 most frequent conditions which appear.  One might easily conclude that all respondents in this data share characteristics associated with these top 20 conditions.  But this doesn’t appear to be the case. More than 318 discrete conditions across all body systems were reported – from Ankylosing spondylitis and Adhesive Arachnoiditis to Toxoplasmosis, Transverse myelitis, Trigeminal neuralgia, to Wasting syndrome.  Some report conditions found in the top 20 tracked by CMS. By far the largest family of conditions linked to chronic and intractable pain among respondents are those associated with various forms of arthritis (arthropathies) – Ankylosing spondylitis and psoriatic, rheumatoid, osteo, facet arthritis comorbid with a wide range of musculoskeletal disorders that include degenerative disc disease, scoliosis, kyphosis, stenosis, hip and sacrum dysfunctions. Iatrogenic injuries arising from multiple interventions include infections resulting from interventional procedures (epidural injections, pump and stimulator installations), arachnoiditis, amputations, and muscle and fascial damage.  Genetic disorders and birth defects were documented that create conditions carried into adulthood. Diseases of the nervous system were documented as peripheral neuropathy, neuropathy associated with progressive diseases such as multiple sclerosis, neurofibromatosis, diabetes.  Diseases of the urological system included interstitial cystitis, medullary sponge kidney disease, and renal failure.  Respondents average 5 comorbid conditions (within and across the body systems) and have been dealing with management of these conditions for an average of 12 years.  This places respondents into alignment with the definition of multiple chronic comorbidities (MCC) tracked by HHS-CMS and defined by CDC. More than 97% of respondents indicated that their combinations of conditions have been treated through a number of interventions (more on this below) alone or in combinations with schedule II medications (opioids of various types, Ritalin).

With all of this going on, what should we expect to learn from their experiences with the current health care system? Generally, more than 50% of respondents report that they are dissatisfied with their health care interactions.  A total of 1057 persons reported that they had experienced detrimental gaps in care for a variety of reasons that include discharge from pain management (29%), loss of primary or specialty care supports or unwelcome changes to supports imposed by system issues like insurance coverage changes or closure of clinics.  Among all respondents, gaps and discharge have resulted in reductions of independent functioning (62%), use of over the counter medications to cover the gaps (28%), increased use of alcohol or tobacco to take the edge off of increases in pain levels (68%), and increased feelings of hopelessness and active consideration of suicide (28%).

More than 41% report that they have rejected services that they feel are inappropriate based on prior experience in managing their needs. For many, this has resulted in discharge from pain management. This comment reflects the thoughts of one gentleman who responded, “Throughout the years I have been discharged from pain management doctors because of regulations limiting how many patients they can have & guidelines issued by the CDC. As a result of having to try to deal with excruciating pain I turned to anything that would give me some relief such as alcohol & illicit drugs. Having massive untreated pain has also caused me to contemplate hurting/killing myself for the only time in my life. Not being able to do things due to being in constant excruciating pain has caused my wife to divorce me & take my children also. I’ve also been told that I must have multiple injections over and over (which I’m unable to afford, and that have never provided relief) if I wanted any medication.” Said another, “I was forced to have a stimulator implanted which does not touch the pain. I have had multiple nerve blocks, trigger point injections, excruciating hydro-distensions, Botox injections, and laparoscopic surgeries. I am about to have another lap with a presacral neurectomy because my doctor doesn’t want to send me to pain management, though he readily admits it may not help. There is a chance I may not be able to urinate or have a bowel movement on my own again, as well as a significant risk of bleeding during surgery, all to avoid pain medicine.” And the cost?

Respondents to this survey are not passive observers.  They have actively sought appropriate supportive care despite the imposition of conditions over which they have little choice – insurer changes, physician and clinic changes, regulatory changes, pharmacy dispensing restrictions, and step therapies.  Threatened by loss of care, they have conformed and adhered to routines that are a mixed bag of benefit for either the short or long term. So far, I have extracted more than 118 interventions in twelve groups: Adjunctives (chiropractic, acupuncture, etc.); Psychological tools (Biofeedback, mindfulness, etc.); Opioid replacements and analgesics (Lidocaine and ketamine infusions); Anti-inflammatories and NSAIDs (Aspirin, Ibuprofen, Ketorolac, Diclofenac, etc.); Neuroleptics (Gabapentin, Depakote, etc.); SSRIs (Cymbalta, Lyrica, etc.); Steroids (Oral, injections); Nonsteroidal anti-inflammatories (Meloxicam, etc.); Opioids (all forms); Surgeries (includes amputations, back surgeries, breast reductions); Interventional procedures (ESIs, pumps, stimulators, ablation); and Discontinuance (which includes forced taper and suicide).  There is a pattern to these interventions beginning from least invasive to most invasive, with opioids serving as the final option – alone or in combination with one or more of these tools.  Importantly, many of these respondents recognize their risk for suicide, and some have accepted that this will be their final and perhaps an inevitable choice where continuing systems of care fail to deliver accessible and necessary care supports. Said one, “I have really never received the care that I have needed because I have to pay cash for my visits because my insurance has a huge deductible, and a pain specialist is very expensive – especially going once a month. I have been living with this chronic pain for about 20 years and it just keeps getting worse! And I had tried several over the counter medicines for pain and they do nothing for my pain.” Abandonment of ineffective care routines is a topic that receives little attention.

The psychological burden imposed by managing complex illnesses under any circumstances is pronounced.  The added burden of stigma and marginalization by the health system that is supposed to support one through chronic illness management is clearly taking a toll upon respondents to this survey.  Add to this the fight to maintain personal and positive identity within a system that has reframed your needs as Opioid use disorder (found in DSM-5 under substance abuse disorders) – under any circumstances a descriptive that deflects the focus of care away from management of chronic, complex, progressive illnesses and toward prevention of addiction without regard for disease management. Are these compatible?  It appears that conformance and adherence has become a matter of acquiescing to stigma and marginalization – an understandable mine field of psychosocial stress.  The monthly urine drug screen has become an emblem of stigmata – a mark that reinforces being treated less than, a threat to withholding fragile supports ‘such as they are.’

Across respondents, irrespective of education, gender, experience, this marginalization is largely uninvited, unwelcome, barely tolerated, and associated with suboptimal care in many cases.  Expressed frustration is reflected across all responses and geographic locations (see map). There is no protection for patients from a system that removes their voice from decisions about managing the burden of illness on behalf of themselves or others.  Adherence and conformance are well reasoned actions after the exercise of autonomous choices. Without choices, they are simply handcuffs that chain patients to interventions that drain their limited resources.  Under these circumstances, suffering is magnified and dignity is stripped away. Said many when asked about factors that affect their choices for care, “I am not an addict, I am not addicted, I am sick, and I just want to be treated like a human being.”

Authored by: Terri A Lewis, PhD.

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Lynne Hall

Surgeries since I was 11. Have adhesions that are invisable to scans. Been on opioid pain med for 30 yrs and living ok. March I was told ,my doctor had to cut my meds because of the government.
I now can’t walk or even get out of bed some days. I am praying for death. The government see,s to want us dead anyway.

Judy

Reading this was so depressing, mostly because it’s all so true….no one seems to care about those suffering with chronic pain, especially our medical community, and our government. No wonder so many are contemplating suicide. Living with UNTREATED Chronic Pain for many years, I know I’ve considered it more than once, so far I’m still here!! Doctors have told me to “learn to live with the pain”…..which makes me believe doctors are part of the problem, not part of the solution to pain management. I no longer waste my time or money going to a doctor for anything but the annual exam required by my insurance company. I’m in pain 24/7/365, but who cares?? I’m LIVING with the pain!! I’m alive but I have no quality of life.

Jerri Killen

I had seen my doctor for 10 yrs. They targeted him and put it all over TV. They could not shut him down because he had done nothing wrong, but because of all the public BS. My pharmacy stop filling my prescriptions. I went from pharmacy to find someone to fill prescriptions. I found one, but saw a story on him and refused to fill it. I had to go to detox for 3 days I was so sick. He is still opened but I can’t drive around all over town to beg someone to fill my prescriptions. I am I hell !!!!!
Rheumatoid Arthritis
Osteoporosis
Connective tissue disease

Please help !!!!

I have had 6 surgeries and suffer daily with pain. My PCP sent me to a pain Management center. I was treated 2 months then tre I ever a letter stating they could no longer do anything for me. Just like that. So on to 3 other clinics. Hours of waiting and huge diagnosis bills. Urine testing and 50 questions each visit with the outcome always the same. I’m given drugs I am allergic to or told I need to submit to costly, risky and not recommended for me by other doctors injection treatments that have not worked. I never see the MD. Most cases it’s a NP. My life is just horrible at this point and I have become more depressed and tearful. My BP on my visit days goes up to 180/111. Not one person has even laid hands on my body to do assessments. I am also a liver transplant patient. My enzymes have recently been climbing also. My health had been good for several years and now it’s on a quick decline. I feel no one cares about my quality of life anymore.

I am a 51 year old woman who has had 11 sinus surgeries to remove tumors, pollops and really crud from my passages. 92% of the sinus bones have been scraped( they hate that word) out and a whole ton of nerve damage remains. My last surgery they discovered behind my skull bone a massive, i mean massive problem. Once it was opened tumors , puss and maybe even my own kitchen sink came out. It was so bad my husband nor my doctor would let me see it.( its on video). Anyways there is no fix, no miracle and Im in constant pain. This paranoia has gone too far. Yoga doesnt help and either does a freaking netti pott. What do they want? Death??

Susan Seelbinder

Thank you!St

Sharon W

I was diagnosed with a rare condition in 2004 called Adult Tethered Spinal Cord Syndrome which was missed on the MRI’s for 2 yrs after a work injury . I had survery to release the spinal cord
and a laminectomy but unfortunately I was still in HORRIBLE pain and I am still suffering. The condition has affected my gait which now leaves me with bone on bone OsteoArthritis in both knees. I have Osteoarthritis in my spine as well as buldging discs in Thoracic and cervical.
I was diagnosed with 5 brain Aneurysms in March 2017. Had a Craniotomy and clipping of 3 out of 5. The other 2 are to fragile due to calcifications of the artery , so they were left as is. They are basically ticking time bombs.
I have tried everything under the sun from physical therapy , spinal injections and Spinal cord stimulation trials. It didn’t help me. I have been weaned down to 4 50mg Tramadol a day . LYRICA was changed to Nuerontin and I was taken off Halcion , Flexeril and Ibuprofen . This was all due to NYS workers Comp who hired a paid liar to review my files and make life hELL FOR my primary care physician. He showed me a threatening letter from DEA directing him to follow CDC SUGGESTED GUIDELINES. He said his hands are tied.
SINCE HE IS NOW NO help to me I left his care. I quit going to pain management 6 yrs ago because I was tired of being a human pin cushion and treated like a drug addict just to get some medication to help with the pain.
I have gotten to the point where I pray to God to let me die in my sleep. When I do sleep.

Priscilla Dennis

The government is making it nearly impossible for those of us who deal with real debilitating pain every day and are able to function only because of our pain medicine. I am having trouble finding pharmacies to fill my medicine. My doctor is not a pill mill. I am worried what i will do if not able to get my medicines, probably be in pain and disabled.

Gregg Franklin

My Dr just up and left and did not tell anyone, He told me that the hospital said he could not write pain meds anymore. Then the next thing I know he was gone. I have been on my meds for 23 years, helps me keep my job and helps with my pain. I am in withdrawal now. The DEA and Government needs to stay OUT of peoples affairs. It’s the street drugs killing people but they will keep on no matter what. Maybe their Dr done them they way I have been done and they could not help but turn to street drugs. I blame the DEA and government for them letting that kind of drug in out country, Heroin is getting in USA because someone up high is getting PAID and that’s all there is to that.

Thank you Doctor Lewis for caring and fighting for our rights as human beings.

Virginia Holmes

I am a 39-year-old, that will not see my 40th birthday this year due to I am a terminal CLL cancer patient that has now metastasized to Non- Hodgkins Lymphoma in my lungs, trachea, kidney, cerebellum and skull base. I am now breaking bones just by moving. I also have severe DDD with metal fusion and rods. They also found a surgical clip from my gallbladder surgery in my right lung. 15 herniated disks, spinal stenosis, scoliosis. Pain Management “Promised that I would not suffer” THEY LIED! I have had my first heart attack after taking away the morphine twice a day and oxycodone for breakthrough pain. Two weeks after they took away my pain meds, without weaning me off. I have now had 4 heart attacks, a PE and now Ischemia to the Anterior right side of my heart. I have 12mm lymph nodes and larger in my lungs and throughout my entire body, including the Leukemia which is in my blood and bone marrow. I NEVER had a problem in the 10 years taking my pain meds. NEVER. They tried to mark me, But I went through NYS Board of Health and stopped that. However, since turning in the Pain Management Dr. NO ONE WILL TREAT ME! Not even the local Hospitals. I have lawyers trying to fight this, however, it looks like I am going to die screaming for my last breathe. I have lost 52lbs. in 4months, I cannot go outside as I am fighting to get oxygen tanks. I cannot sleep due to the pain and anxiety, knowing you doctors took an OATH “TO DO NO HARM” Yet you have again let another patient suffer and give up hope. And now all I can do is make it to my couch and to my bed. I cannot even eat anymore. What happened to this country, have you all gone mad?! I am not and never was a drug addict, and never will be. How can all you Doctors just stand by and watch someone suffer to death? Thank you for letting me suffer to death, LITERALLY! Virginia Holmes

William Hatcher

had 5 shoulder surgery need a shoulder replacement at 6 open back surgery with radiculopathy pain and my pain management is all they can prescribe it two pain pills a day this is ridiculous I cannot get my pain under control he says that they are limited how much he can write need help can not get my pain under control next surgery is shoulder replacement don’t know what I’m going to do I live in Baton Rouge Louisiana this is ridiculous we live in the land of the free got medical records knee-high and cannot get proper treatment all because of opioid epidemic from people who like to get high and overdose I shouldn’t have to pay for their sins far that people abuse drugs do not classify me in this category I have legitimate medical issues tell me what I can do

hCrodd

I’m glad someone brought up the subject, I figure no one cares about what happens to chronic pain patients. I know I am not the only one who got ignored and kicked out for no reason off pain medications. I was a good patient, never failed a drug test, never done anything wrong , and just all of a sudden got thrown into another evil medication suboxone, I heard they are creating another market since they are no longer allowed to sign the amount of narcotics they used to prescribe, we are to pay, cause according to them , we are st fault, for being in pain and having a medical condition/injury. Thanks government for making it hard on us, you really like the poor, the old, and the sick , gone , don’t you?

Barbara Snow

I completely agree with Tom, it’s time to sue the CDC ,DEA our sitting congress, and whoever else. I have been asking on this tread if that is possible?

Kathryn Willette

This is a well-written article. It expresses my voice eloquently. I’ve had leg and spine pain since childhood, and have found that it is genetic, and my spine is riddled with bulging and herniated discs, spinal stenosis, osteoarthritis in my hips and spine. It was described as “disgusting” by one doctor, This is in addition to a plethora of health problems, all of which, in themselves, would constitute pain medicine, such as level one cancer, autoimmune illnesses (all of which give me pain), 4 major surgeries within the past year, and infections that have come from the hospital and left me in so much pain, I could not get up to go to the bathroom nor use my left arm, and yet, the very same hospital would not prescribe me any pain medicine.
So many of the “pain” doctors are anesthesiologists, and only want to treat the spine. So, they make patients get injections, which are extremely bad in so many ways! I know of those who have gotten more severe problems from the injections, and I developed psychosis, also known as “roid rage”, yet they claim to treat fibromyalgia and other autoimmune disorders. I have been told flat out that if I could not get steroid injections, they would not treat me. I left my pain doctor, who had been cutting down my dosages because he accused me (as he did many of his patients), of changing my appointment, so that in reality, I could watch my granddaughter, to try to see another doctor and get more meds. I have been living in constant pain since and had to taper myself off the meds I had left, for the past 7 months. I go to a chiropractor who does spinal decompression, but it’s costly. I desperately need massage therapy, but it isn’t covered for me, so I live in pain.
I am single, and take care of myself, but had to leave my 40-year teaching career to fight for disability, The cost of my health issues has been not only financial, but has made me unreliable to my friends’ and family’s offers, and has caused either a break-up or a strain on my relationships with men. It has left me isolated and lonely. The hardest part has been being unable to care for my granddaughter on a regular basis.
I have NEVER taken more medicine than I have been prescribed, and yet, I’ve been made to seem like an addict or a druggie. I resent this immensely. I didn’t ask for my life to be this way, and never thought I’d end up like this. I can hardly go to the grocery store, but make it a point to smile in spite of the pain, so not many know.

Shannon Riggle

I was dropped 3 years ago when they started this.CDC needs to be responsible for there actions as well.They are hurting alot of us that just try to stay Out pf pain and keep it tolerable.!!!!—-I cannot believe how many people theyve affected including the Dr.s that are trying to help.
I can barly do anything with my kids on the days I can its like I fight thru the day to go home with a hotpad and ice pack blah blah blah.If this is what there. Going to do for people with resl problems dont expect us to not go elsewhere .People will seek other ways to get out of PAIN.Mine might just be working CBD/THC tincture may just heal all of it.

William Fenton

I broke my back on jib in 2003. Has a 12 hour lumbar fusion. Been on meds for 15 years.just broke my back again. Had all my neds taken away .ive seen 3 pain clinics. Several nueo surgeons.orthopidist and more.many trips to er. no one cares.compassion is gone. The only people gaining from this us the drug dealers. I am 65. Have been drug tested by these dictors and followed my regiment.

VEW

Well when everyone takes NSAIDS and Nerve pain medication for chronic pain and their kidneys start to fail insurance companies and the health care field will regret taking away opioid pain medication. NSAIDS damaged my kidneys. So now what?

Carol Doris

Looking at the numbers is extremely disappointing. Not just reflecting the plight of people suffering needlessly but also the size of the survey itself. This discussion affects millions of people and unfortunately with data that you collected from a thousand plus people indicates that you are not able to reach enough people who live in chronic pain. I don’t pretend to have all the answers but clearly we need to get numbers that will cause the powers that be to listen.
If the numbers of people dying from opioid abuse total 40,000+
and this group of respondents is less than 5% of that figure, which is 0.00005% of the US population,
then we really don’t have the ability to make Washington listen.

I have noticed the pain doctors don’t mind the pressure for alternatives to opioids. They can bill more for injections and other procedures than they can for opiates. They push the patients to accept these expensive procedures even when they don’t work well by saying you can’t get pain medications unless you agree.

And it is all within the standard of care and makes pain doctors look more virtuous to government lol

Thank you Dr Lewis. We need more people like you to stand up for what is right. Keep up the good fight.

Lisa

I have to have c spine surgery .After 13 injections and a year stuck in bed and suicidal . I was at the emergency room this weekend .I new better but my family insisted .They gave me Tylenol and discharged me ( Because I had to much Pain!! I’m tired and I really think They want to kill patients in chronic pain ,

Lou

I commented on a docket in hopes of explaining I have tried every option available to treat the severe pain all of my permanent illnesses cause day and night with opioids being my only relief. I am not an addict, I worked a job I loved, as a law enforcement officer, until I could no longer work due to constant pain. The opioid crisis should be handled where it is a problem, on the streets not in the doctor’s office.

William Dorn

How did being sick or injured turn those of us in chronic pain into less than human. We are labeled addicts and denied the proper amount of medicines we need to live a fairly normal life. This is a nightmare. Please restore our rights and let us live again.

Cindy

I agree with James, what do we do we need to do next? Show me the etition the congressional meeting the March, I am there. Our voices are being drowned out out by the tragic heroin crisis. And we ain’t them

Heather

There has been yet another attack on healthcare, with no alternative offered in its place. When the bottom drops out, I will probably be without insurance and therefore, without care. I fight all the time just to take care of myself — the routine itself is tiring, but without meds or ability to see doctors, I will lose my ability to work.

Why does the government seem so determined to drive me to disability? I do not want to die, but I don’t know how I can live.

vince

I am a patient with several issues with chronic pain i hope something gets done for us we are being hung out to dry 16 years ago when i had surgery came out with more pain and was hopeless until a pain dr helped me 13 years ago when i was being seen for suicidal tendicies and after 3 years got opiod meds and got part of my life back but lost alot wife of 20 years had my own business couldnt hunt fish i was completely hopeless. Now after 13 years of taking opiods im scared they will be taken away and dont want to lose what i have now

Misty Hoffman

I now understand suicide….I WANT to live and grow old with my husband and watch my only son grow up. (I crushed my vertebrae when he was two weeks old due to a nurse practitioner that refused to listen to me regarding my emergency c-section incision and less than 24 hours later severe sepsis caused my MS to flare and I fell down our stairs. The ER physician would not listen when I said my back was broken, I was admitted for life threatening sepsis and 24 hours later when they did a scan of my abdomen they saw crushed vertebrae….later made worse by botched vertebroplasty that was inadvertently leaked into my disc space and next vertebrae to harden…bad injections and a neurostimulator implant that does not touch my pain.) Ive tried every non narcotic pain relief method available for my spine, MS and trigmenal n. Nothing helps but opiates and even then I still have pain. Without them I will not be able to shower or dress myself, let alone be present for my family. Nevermind my ruined career and law school dreams. I refuse to just exist in agony and be punished for addict behavior. The people in our government “running” things have no clue. I have never wished my pain on anyone, but I wish the powers that be to have a taste of it, especially Attorney General Jeff Sessions, who said we should just “take a Bufferin and go to bed.” Bufferin might as well be a Tic Tac and I can’t help but wishing him crumbling vertebrae and only a Bufferin! I’m no longer just shocked and sad, I’m pissed! This administration is screwing the people of this country left and right! Not just with health care either! We have cancer patients and war veterans that hav intense pain because they fought for this country suffering because of these assinine policies. Alcohol and cigarettes kill thousands of people annually too, just more slowly in most cases, have no medical value, but people are free to slowly kill themselves that way. It’s just not as sudden and not the “current ” policy agenda. Oh yeah, and the money tobacco companies had to pay the govt is probably just about gone….then we had the war on drugs in the 80’s and 90’s….we all know how that went….this time they’re picking at the wrong people! We are not addicts! Opiates are saving our lives! Focus on the heroin and carafentanyl on the streets! Prescription opioids are significantly down, yet overdoses are up. This isn’t rocket science! I WISH I could speak in person in Washington DC before my pain management is gone

tom

Ultimately we’re going to need to establish the withholding of care as a form of malpractice equal to any other and get that through the court system. It’ll take some lawyers with a taste for risk and fame, but it’s likely the only remaining path. And it’ll take years many of us won’t have left. It’s pretty clear the legislative process is going away from us like a runaway train as it so often does. I’m not sure where salvation lies, but it’s going to have to be the law and doctors are going to have to start risking their necks for their patients, or the body count from us is going to go through the roof, and it’s already too high now.

Jeanne

Excellent story. Well told. 😊

Vondie Groft

I missed the survey, however would like to make my story known. I’m a 58 year old business woman, married 42 year’s & have 3 grown daughters and 5 grandkids.
My parents divorced when I was in 3ed grade moving me to my grndmother’s 30 horse farm. Up at 4 AM every day to feed & every night, living with no indoor bathroom. Life was hard & I was hit by a tractor, which damaged a growth plate on my right side. I only grew to 5′ so I’m not visibly disabled but the damage is there. My right leg is shorter than my left & has caused me lifelong pain in my spine. As a young woman I controled this pain with chiropractic care and OTC meds. My husband and I grew a company that’s now 30 years old. I built the sales side & traveled 4 mnths a year for 16 years. I became a kickboxer, bodybuilder & worked out 3 x’s a wk. 7 years ago my son in law, who had been physically abusive to my youngest daughter, lost his mind. He kidnapped her and our 6 week old grandson for 3 days and horribly abused, beat her & broke her face. She protected her baby. He had sent my 2 year old grnddaughter to his mother’s who was abusive to her. Our daughter was finally able to get an e-mail to her dad, we acted quickly. He was arrested and released. It took 2 yrs of fighting, but hes now serving 5 years in a state prison. While fighting to put this man in prison my daughter became a heroin addict for 1.5 yrs and went to prison herrself, serving 2 yrs. She’s now legally disabled with PTSD. I was working & raising 2 young children, no time to go to the chiropractor. Carrying my infant grandson put a tremendous amount of strain on my spine. 4 years prior to this I ruptured my L5/S1 disc on a business trip, that resulted in surgery. Future MRI’S showed I have many herniated discs, bone spurs and a Tolov cyst at the base of my tail bone. I also have arthritis, fibromyalgia and a scarring condition called Keloids. Now my husband’s heart is failing and my mom passed away. Physically I needed to take care of the kids, our company (40+ employees, some there 18 yrs) my sick husband and our home. My dr put me on pain meds because I got a bleeding ulcer from the OTC meds & stress. My husband’s been in the hospital 8 x’s this year. I still help raise my 2 grandkids and do what I can at our company. Except now, because I’m just collateral damage I have to do all this in pain. My govt made my dr abandon me!

Vesta Ard

Excellent job. Dr. Lewis. Glad you have our back.

Julia Heath

Wow, does this sum it up well or what! A powerful tool and definitely worth sharing EVERYWHERE!

Alvin

I wish that I could have responded to the survey. Just became a member 3 days ago.

Notasheep

This I understood and is exactly what they need to see. Print out lists of suicides by U.S. ge nocide to go with it. THIS is what we all need said and in simple words the committee will understand. THANK YOU

Thank you Dr.Lewis for trying to let our voices be heard. But we need somebody to help us sue the ones who are causing all this mess. The CDC and so called experts. I saw my pain doctor for the last time on June 19,2018 .I knew Dr.(E) was going to abandon me a couple of months ahead of time, all the signs were there. On my last visit I told him how I felt, I had nothing to lose anyway. When he came in the room he looked like he had crawled out of a cardboard box, he was very unkept looking,hair messed up, beard stubble unkept, eyes very strange and he was hanging on the table. I told him if we came in looking like that that we would immediately be suspected of doing something wrong. I asked him when he had passed a pee test last. After I gave him a tongue lashing on various things he asked me what I wanted and I told him I wanted to be treated with the same respect that I had always given him. I told him I did not deserve to be treated the way he and his office had treated me. They had done all kinds of things that no doctor should do. They did not like it when they saw that I had taken my sister in with me. He was afraid of something. He lost his temper a couple of times. When I saw his fear and his temper it made me feel GOOD because I knew that in some small way I had made him feel the way I do. When I left I told him I was so glad I did not have to deal with the antics of his office any longer. I also let him know that there is more than one way to abandon a patient and that it was to give a person so little pain relief as to have no effect. I let him know that at least I had not caved in to the higher powers and that he and doctors like him should be fighting for us and not against us.I have no pain relief now but I left that office with more dignity than they have. For that it was worth it all. — The hospital sent me a patient survey a couple of days later and asked me about my experience with their pain treatment center, they said they strive for excellence. I told them the truth and that they really needed to work a lot harder.( Their pain center is part of a hospital complex).

Laura

I’m so relieved that I’m not the only one that feels this way; that I’m not being unreasonable in my needs. Not that awareness is enough to result in any changes. And after 2 years of dealing with the worst of this pain with no real understanding or relief, suicide seems a reasonable answer.

DOAN

Incredible job. This is a sampling of the whole group. I can’t imagine what the total, complete numbers would be if all pain patients had responded.

I am grateful for your interest and dedication. I hope to continue to follow your work.

Robert Ivan

For reasons I feel we all know now, from the last two years of compassionate, thoughtful CDC guidance, our government treats a large constituency of it’s citizens to barbaric behavior.

Can you imagine if the United States targeted a minority group of people (non-citizens included) to the kind of torture we must endure, we would see the entire world cry out for justice. Take away the Quran from terrorists at Guantanamo Bay and watch the cable news services go on overdrive. I myself would rather be water boarded that live through the mind games my current doctor is putting me through.

Taking away the civil rights of illegal alien children by separating them from their parents, placing them in conditions far better than they have experienced in their third world reality is currently saturating the airwaves. My God imagine the horror of a bed, TV, video games, three squares a day and toys to play with….
Or if I watch one more commercial asking for monitory contributions to mistreated dogs and cats, I’m going to SCREAM!

Are human beings not a tad more important than a puppies? The answer is a resounding NO!!!

Nancy Cahalan

But will the findings of the survey 1. be read 2.be taken seriously 3. be effective in providing needed change 4. be the catalyst to further research into the area of chronic pain and the most effective treatments which would have to include personalization (not everyone’s pain is the same and not everyone responds the same way to treatment) 5. be effective in removing the stigma that comes from suffering from an “invisible” disease and needing pain medications that can become addictive but are NOT in the case of many chronic pain sufferers.

a month.

I have also lived with chronic pain for over 40 Yrs. It began in my back when I was shot down in Laos 1971. As I aged, this coupled with arthritis, became an issue to work effectively. In 201I had to have a quadruple heart bypass. In 2014 I had septic shock caused by removal of a kidney stone performed in the Hospital.I was fortunate to find a part time job witch lasted 2 yrs until I had septic shock again, cause unknown, even being on official LOA I was fired as it took a month and a half to recover.in 2016. I also was sent to a : “Pain Specialist”. After a yr. of facet injections to ” locate the pain” I was told I would need them to burn the nerves. I was on my wife’s insurance plan, I was told it would be $10,000 out of pocket. I went back a month later and the N.P., after being forced to use their in house urine sampler said I tested positive for barbiturates. I told her of course I did the medication, Fioricet, for headaches, that she prescribed has a very small amount in it and Tylenol. She said that was not true, I said you have a PDR in the phone you look it up, she refused and left .I made them give me all my records and told them to discharge me and I left. I live in the Texas Panhandle and when recreational marijuana was allowed in Colorado, and as a last resort drove 4 hrs and it took a week or two but suddenly I had some hope and peace and much less pain.Don’t allow the Cannibus stigma stop you if you get to the point where I was. I had put my .45 to my temple several times but thank God he stopped me. Now this is only for certain levels of pain. Those with pain such as my Mom did from cancer and kidney failure won’t work. She was given morphine around the clo in hospital until she moved to Hospice where she passed in a week. Don’t give up!!

Debbie G.

Friends….PLEASE RESEARCH KRATOM. It works!
May God bless each of you. Lean on Jesus, He will hold you up with His Mighty Right Hand.

Terry

Well as usual you are right on the money. Unfortunately it doesn’t help us. No matter how much we scream, jump up and down, wave our arms, recite statistics, say how unfair it is, threaten to sue the doctors and agencies, it doesn’t matter. Let’s just say for the sake of argument that my pain management doctor decided to grow a pair and reinstate my meds back to where they were only 4 months previously, and I’m talking about 200 mgs of oxycontin a day, that’s what it took for me to feel alive, useful, happy, and productive, so now, hypothetically, my meds are reinstated, but here’s what’s going to happen, my pharmacy, which by the way is the ONLY pharmacy I’m allowed to use as per our insurance company, anyways they have the right to deny my prescription if THEY feel it is too many pills, do you believe that [edit]? They can also limit me to only one weeks worth of meds so then I’ll have to pay the copay 4 times in a month, and each week I’ll have to go to my pain management doctor and get a script for one week, and that counts as an office visit, 4 weeks in a row, cha ching and that’s only IF my meds get reinstated, oh and btw, my insurance company only allows 1 visit per month for pain management doctors oh and if they don’t have my meds I can’t even go to a different pharmacy. So I know I have been sounding like a broken record and been very negative but I’m defeated, they’ve beat me down and now I’m just another 60 year old schmuck with the mangled body of a 90 year old man and there’s nothing I can do about it. So when I read that the survey results show that 1687 people responded to it I think to myself that we really need over 100,000 people to do the survey, we’re not even a blip on the radar. The only thing I can say is, be strong, lean on friends and family, and get used to your new life, now and forever. Sorry again for being a wet blanket but I think everyone can agree. God bless all of my chronic pain brothers and sisters.

Linda

Thank you for sharing the information from your poll. I’m sure it was a lot of work and I really appreciate all you’ve done and are doing. I wish more people had responded though.

Gretchen

Thank you for trying too help us there are many of us dying sooner and being tortured by the pen of legislators who mostly are practicing medicine without a licence I have 7 layers of metal from C2 through T2 and inoperable my quality of life is terrible like many others the mental abuse Iv endured trying too survive is something I never thought would happen in what used to be America the perminatly disabled pain managed community is being treated like Hittler treated the Jewish community we have no Constitutional rights all because of abbusers who seem to matter more then us I can’t help but think this is part of the new health care plan to kill the disabled and pain managed people there is no longer a America for us

Tootie Welker

My old dog with osteosarcoma gets better pain management than I do, thankfully. But as she declines, so do I as she was the last reason I had for hanging on. I’m tired of waking up in pain, of having [edit] sleep night after night from pain, of seeing my functioning and quality of life deteriorate, of experiencing the suspicion and dismissive treatment from my supposed health care provider. I’m just tired of fighting, it’s not getting better. But when I do finally decide I can no longer continue, and I know that day will come, may be soon or it may be in a year or later, I will name all those within the health care system that failed me. I will make sure they know, and others know who they are. I sometimes even have fantasies of doing it in front of them so that I can scar them and cause them perpetual pain as they have caused me. I’ve been a long time practicing Buddhist (Vipassana or mindfulness, that same treatment they now think will relieve people of their pain but it doesn’t) so my wanting to cause them emotional harm is not within my belief system, but after suffering for so long, it changes you. The anger and hopelessness change you. For those of us who once were able to receive decent pain management, I think it’s even worse. Because we know it’s possible but they just won’t give it to you any longer. Who knows how many suicides it will take before they realize they are just creating another crisis in their ineffective attempt to stop the OD’s from heroin and fentanyl by not treating people living with chronic pain with the one medication that provides relief.

Maureen M.

Excellent summary!! Thank YOU!

The title says it all… “Who are you people anyway?” This is EXACTLY HOW WE FEEL!!! Hung out to dry and so very NEEDLESSLY ABANDONED after so many of us had years of relief and could live a somewhat normal life we suddenly found ourselves “grouped- in” with that nasty little word they call the “opioid crisis”. Those who have no idea what chronic pain is indeed have no idea just what a crisis this has become and never will…

James Loranc

Thank you for your efforts to gather all this data; it may be useful to chronic pain patients as individuals, but, now that the data has been accumulated, what is being done with it? As individuals (marginalized at that), we have little or no effect on regulations or public opinion (which influences regulations) but as a group or organization, you may have more impact. I’m thankful that organizations such as the National Pain Foundation and the US Pain Foundation are working for chronic pain health care reform and I’m sure there are plans to use this data; I would just like to know what the next step is.

Deborah

I thank you for covering this very important topic. I was hoping more pain patients submitted the survey. I am very sick and really pushed hard to be heard and to help my fellow pain warriors. I am hoping I’m able to call in and participate tomorrow as I just got out of the ER.
So I urge those who have the strength to please participate tomorrow. It’s our time to be heard. Please don’t give up. Ok. Hang in there guys, my heart hurts for you all.