The Problem of Multiple Comorbidities in the Chronic Pain Population

The Problem of Multiple Comorbidities in the Chronic Pain Population

By Terri Lewis, Ph.D.

(Dr. Lewis continues to mine the chronic pain survey that she conducted, and the National Pain Report helped promote this summer which attracted 3,000 respondents and over 200,000 lines of commentary from chronic pain patients, loved ones and providers. We also continue to learn that chronic pain patients often have more than medical condition. She has submitted the results to the federal government.)

Terri A Lewis, PHD

The Center for Medicare Services (CMS) tracks illness complexity through Medicare and Medicaid billing data.  The last large data publication is for the year 2015, but it provides us with insight about the prevalence of multiple chronic comorbid conditions (MCC) by age and payment source down to the level of state and county.  With this data we can get some insight into the health complexities of persons who use multiple medications, including opioids, to treat various health challenges.  But within the data that is published, CMS only tracks the most frequent conditions associated with the preponderance of billing claims. This amounts to 19 conditions associated with claims data across all body systems, physician specialties, and billing claims made and paid.

In Table 1 below, we see columns for condition, percent of the population, age, sex, and program. Dual enrollees are persons who are eligible for both Medicare and Medicaid and nondual are associated with one program or the other.  In Table 2 we see the percentage of users who are reflected in the data, along with the number of conditions that are ‘comorbid’ or associated with each other.  One can infer that the more conditions one is dealing with, the more likely it is that the individual will have multiple physicians, receive services from multiple specialties, and as the conditions increase, are more likely to receive multiple prescriptions.

Table 1.

Table 2.

What about the large percentage of medical conditions that are not represented in this data? The survey results indicate that many of you are dealing with the conditions in the table above.  But most of you are also dealing with significant disease processes that are invisible to the published CMS data tracking system.  It makes me wonder whether this lack of reporting and tracking might be one of the reasons which we fail to understand the problem of ‘chronic pain’ overall as it is represented in the 20% of the population.

The impact of MCC among the 2988 respondents to the survey response looks something like this example in Table 3. Each cell is one person.  Each person identified the diagnoses (1-5+) for which they were being actively treated.  The majority of these diagnoses are known to also generate chronic, intractable pain. Three hundred twelve (312) separate disease categories were identified across all ICD-10 body systems that are reflected in CMS billing claims, but which remain invisible in the current published CMS data tracking system.

Table 3. Reported Comorbidities

Respondents characterize their disease and pain symptoms in terms of the length of time from diagnosis. In about five percent (5%) of the cases, individuals report that their disabilities and management issues have been present from birth and have persisted into adulthood.  The clear majority of cases are the result of illnesses with onset after the age of 18 years and are reflected as chronic illness with persistent, progressive symptoms, or as the result of disability acquired secondary to medical harm.  Medical harm is defined as injury acquired as the result of a medical treatment or procedure.

Table 4.
Table 5. Current Medication Status

Table 5 provides some insight into the status of interactions with opioid medications for respondents with high needs and multiple comorbidities.  Many have experienced a change to their opioid prescribing routines that include discontinuance or forced taper, step therapies, loss of a prescribing physician, pharmacy refusals, insurance changes, or regulations that prohibit some types of payment arrangements.

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Authored by: Terri A Lewis, PhD.

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As usual, not one of the tables listing the disease/condition causing the chronic pain lists CRPS as the reason for treatment and medication. This so called tracking of illnesses by the government needs to change to reflect the real Chronic Pain diseases that all of us are suffering from.

Jill

Reading through the posts I couldn’t help but identify with both Heather and nana. When I was diagnosed with spinal arthritis, the beginning of all my angst, I was told” there is no cure, keep your weight under control and exercise”. I did exactly that first using my youth and later in my sixties using opioids. With my reduced meds and aging body limiting my ability to move my total body arthritis is going to progress more rapidly, as if its not bad enough. I wish future generations much luck living under our terrifying government controls.

Johnny Brown

I’m fead up as is all chronic pain suffers I’m sure! The state’s and federal government seem to be helping the abusers (addicts) with new and improved programs to help them and we the pain suffers have had what little hope and comfort in life all but taken away! I finally was awarded ssi disability and 6 months later awarded Medicaid, the only problem a large part of pain management doctors don’t accept Medicaid, the doctor I went to see that I paid out of pocket the first visit told me they couldn’t accept it and that I’d either have to change doctors or insurance which I can’t afford! In the 27 years I’ve dealt with chronic pain. Would have never believed that something like this would happen to people that their only crime is suffering with some sort of incurable chronic pain! UNBELIEVABLE!

Donna

My son is 28 years old and has a rare kidney disease called Loin Pain Hematuria Syndrome he had finally found a psychiatrist pain management doctor in New Orleans Louisiana He had this doctor for about a year then the Oh pad epidemic drug hard and he lost his doctor. It had been over a year now that he has no pain doctor and can not find one in Louisiana, I have called every where. Their is no cure or procedure to help him only pain management. He suffers in pain every day he can’t get out of bed for weeks at a time. I am heartbroken to see him in this knif of pain on a daily basis. Their is nothing I can do to help him it’s been 11 long years now I don’t know how much mote he can handle. If anyone can help please let me know. We are desperate. We live in Louisiana about 60 miles from New Orleans

Lynda Hillebrenner

I wish to thank Dr. Lewis for her efforts on behalf of those of us suffering with chronic pain and multiple comorbitities. Scientists & Regulators don’t obviously care that our quality of live has been drastically effected. These statistics are sadly more of a impact than our years of pain, tears and suffering. These statistics are so very, very important and what will get their attention, at least that is my prayer. You have shown so much compassion & worked so hard to provide some evidence that the CDC & DEA are wrong. They & the politics of blaming medications instead of separating illicit drug deaths from proper prescribing practices of physicians and threatening their livelihoods, are responsible for the deaths of several chronic pain patients because they could not endure the pain any longer. I am a retired & Disabled Health Care Practitioner & University Professor, and maybe I understand & appreciate your efforts Dr. Lewis more than others, only because I know what will maybe catch more attention of these policy makers. I hope you are able to publish your findings in a respected health journal to get the attention of physicians and policy makers. I pray that the very in-depth study that you conducted reaches & translates our suffering with the numbers you have tallied and presented. I only wish I had the strength & physical ability to help promote this information & get it in the hands & minds of those who can effect change. Thank you again!

Steven

Thank you for all your work Terri! I have multiple things wrong that are getting worse. Neuropathy being worse. They have taken some meds away after dafely taking thrn for 22 yesrs claiming they sre contraindicated, meanwhile lowering me to 90 mme from some 325. Why are the doctors not forming a union and standing up fot what is right? Do no harm? Joke. I have just about had it. I want to live not die in the most hideous of ways.This is real not just numbers on a chart. Help God.

Stormi Stebbins

1. My “Disability” due to a physical injury is classified as NOT covered by “Medicare” classified as “Social Security Retired.”

2. Medicare has specified my medical care, bills for my back injury are NOT covered by Medicare, due to an injury settlement “…all future medical care expenses for injury are to be paid by “employer.””
-How does Medicare classify cases such as mine? Does the Medicare data include, this type information in the “Database?”
Just bringing to attention to ensure, hopefully the data is clearly documented.

3. The past (5) five years, I have received very little, no additional pain management medical care services other than office visits to a pain management clinic. I have experienced denied services, delayed necessary surgery for (2) two years, another surgery was delayed (15) fifteen months, and I was without medical treatment and medications for (18) eighteen months. I have not received, decades level of historical, medically documented, necessary pain management treatment, and medications which have been denied for periods of time and dramatically decreased to only further disable, enhance to increased pain and suffering.

The Insurance Company has dictated and influenced the level of care I receive for any necessary pain management care, additionally have overloaded, and compounded the efforts of my medical team for treatment, physician, pharmacy, surgery, hospital with delays, time wasting, requiring additional paperwork, and numerous hoops to jump through. Gone to extreme levels of thwarting and hoop jumping to interferre with Chronic Pain Management Treatment.

June

Terri I do applaud you for the work you are doing & the help you are trying to get chronic pain patients.i am a chronic pain patient the main pain coming from a little recognized disease that causes excruciating pain & other complications.i have tmjd also migraines, fibromyalgia & COPD.i have been on opiods for 20+ years after getting regulated on proper dose(which now they say was too high)my quality of life improved greatly. Now unfortunately I have been forced to wean from 75mcg to 25mcg & soon lower It barely does anything for the pain & the really sad thing is I’ve asked my pain management what else I can do & I get no answer,just because they want to lower meds doesn’t mean my pain goes miraculously away! It has not. my quality of life has diminished to the point of unbearable.So What’s the Answer?!?

Lori T.

Thank you Mrs. Lewis for the help you are trying to give to us that have no voice. There is an interesting article on Medscape (a site generally meant for medical professionals.) Being an RN for 35 years, now on disability due to Crohn’s disease, I read the article. I can’t recall the title of the article but the jist was that hospitals were seeing a huge spike in suicides stemming from the so called opiate war and that maybe professionals need to take a step back and reconsider these forced tapers and cut offs of opiate therapy for the chronic pain patients. DUH! Really! Didn’t anybody think that this would be a very likely outcome when they started this crazy business of taking people’s pain medications away? Chronic pain patients have a difficult road to deal with as it is, let alone the horrendous cost envolved. Those of us who are on Medicare or Medicaid don’t have that kind of disposable income to pay out of pocket for our medications, which by the way, have been jacked up in price as this mess continues. I don’t know about everyone else but my morphine has gone from a tier 1 medication for many years, now it is a tier 4-5 depending on your plan. This is outrageous on many levels. Overdoses have skyrocketed and those who feel the need to leave this planet because they can no longer tolerate life long pain and being treated like a criminal has now become a real problem. I am sorry to be so negative. Many of us have no support system to give us encouragement. We are too sick to even go to a protest. This is serious and very scary for many of us. The voices that are being heard are the cries from many family members who have lost a child to a drug overdose. The politicians respond to those folks by enacting draconian opioid laws….for more votes. It’s a sad situation. One wonders if this concoction of laws is really meant to have all of us chronic pain patients to do ourself in thus reducing the numbers of people needing opiates. Just a thought that repeatedly goes through my mind. I would be interested if others in this predicament are feeling the same way. Again, thank you for your help Terri Lewis with spreading the news regarding chronic pain patients. I only wish there were a million more souls out there like you, trying to dig deep into the surveys and numbers to help us ailing souls. May everyone find the hope and peace they need in these very dark days ahead.

Hayden

I suppose it is beyond my intellect to understand why, after 23 years treated with a tailored dosage of opiate medication ( still able to make my own living) after all other oral medications, non opiate medications, physical therapy, aquatic therapy which relieves some pain WHILE in the water, chiropractic, a personal regiment of exercise ( inspired by PT), and now trying “kratom”, cbd oil (no thc in NC) all while writing every Washington representative to NC, the NC Medical Board (who could care less and offers NO direction), calling and writing the CDC, HHS, and FDA plus filling out every questionairre available concerning adequate pain management have FAILED miserably to even inspire “some” hope and inspiration that the “experts” might give one damn about pain generating disease and injury treatable with opiate medication as the very LAST effective therapy to manage diagnosed and documented lifetime severe pain, I have lost ALL faith in my government, at least the state and healthcare agencies when it is WELL KNOWN that approximately 10 million people now suffer with treatable lifetime pain so severe that the only way to ease pain is either break the law or use illicit drugs so dangerous that the first use ……may be the last use of them or end life…..period. A more clear message from dot/gov that we, the pain management patients are simply expendable could NOT be any more clearly sent. It has taken a little time but, we the patients now understand and have understood for some time now that the CDC “guideline” for opioid prescribing physicians was simply a “backdoor” way for DEA to forcibly taper patients down on opiate medication that were doing just fine as is documented but DEA…..does not care. WHAT GESTAPO tactic will be next??? Too many people ALIVE in the USA? It doesn’t seem to matter what your distress, pain generating condition is OR what your age is. Yeah…. I AM angry but my last choice to escape pain is becoming more realistic day by day. ALL some estimated 10 million patients had NO input before reduced in oral medication, opiate medication so much dot/gov realized that there was NOTHING we could do to have some sort of life.

Terry

Well it looks like they put a lot of time and energy into these charts. Good for them! Very interesting and informative. Does this help us in the chronic pain community? I know a lot of hard working folks have spent a lot of time and energy putting it all together, but how will this help us? This issue needs to go in front of Congress for investigation, we need somebody with a voice that the public will hear and pay attention to. Charts and graphs are all well and good but who’s reading this info? I’ll tell you who, US! Maybe 3000 or so chronic pain patients read and agree with everything that’s been shown on this forum. So we’re all griping, investigating, sounding off, etc. to each other. We need a champion for our chronic pain brothers and sisters. So maybe you can write a thread asking EVERYONE to send emails to their congressmen. I have emailed the facts along with supporting statistics to my congressman over ten times and I don’t plan on stopping anytime soon. I have received replies two times from my congressman Henry Yanez, unfortunately he didn’t take a position either way, he empathized with me and was thankful for my long email but never committed to help in any way. It’s only a hot issue for the people with chronic pain. There always seems to be around 3000 people or so that are participating in these polls, stats, or chart information. If we could find somebody with a voice, committed to our cause, then we might get somewhere. In the meantime 5 more people have committed suicide. I have thought about suicide in my own mind, imagining being in heaven with no more pain, but I have too many people who love me and depend on me (I probably wouldn’t have the courage to do it anyway). I wish I knew of a way to get someone “important” to be our advocate, but I dont. We need a million person march on Washington. Great idea huh? How do we make that happen? My pain meds have been drastically reduced super fast to the point of having withdrawals. My doc didn’t “taper” me off of anything, he is afraid of the DEA, he just cut me from 200 mg of oxycodone daily to 75 mg daily. And obviously it doesn’t do enough to allow me to participate and lead a full, happy life like I did before the “opioid epidemic”. Same old story, same old nothing.The stats about fentanyl and heroin being the cause of 98% of overdoses and less than 2% are from the folks with legitimate prescriptions are not getting to the right people. Bless you all.

Chris

I suffer from being in chronic pain and many health issues- I have been on high copious amounts of medications and am now way low and even the little I get is getting taken away due to this political mess. I am a full time single Dad and this is not only affecting me- I would really think that more people who are allowing this to happen to millions of people and not have any understanding. Is it my fault that Drs. have prescribed me medications for 23 years. Now I’m in the worst health I’ve ever been. Including having medical treatments that have caused even more damage- pain etc. My point is that now I’ve been knocked down- and told I’m being forced tapered and that quality of life is not the concern. I feel that there has to be a science based look at this. I would like to talk to the advocates and find support. I’m being treated as if all the previous Drs were wrong. All my problems don’t exist when it comes to the pain. I’ve recently been given a disabled parking permit. And had to apply for disability due to my health. So I feel victimized that now I’m at the worst health and for 23 years I was given medications. What’s wrong with this. It’s not humane.

Please help me find help in Washington state.

Victim and single Dad to this opiate war. With 23 years of opiate treatment. Now it’s getting bad. People that need to be able to stand up and participate in this to get a true study are being silenced in several ways. Another issue is the use of suboxone?? Really? This is another issue . I’m not going to get to far off base. But let me say that was not a medication that was designed as a treatment .. years ago. The manufacturer of that medication said it was a medication to help for addiction, to be used for 30-60 and in worst cases 90 days. Now it’s being used to treat people for physical dependence / not addiction and then there are some studies I believe that have shown it works for people in pain! I don’t know anyone that would show evidence of that. Most people I know that suffer from chronic pain that have tried to use that medication say or have experienced the loss of the medication that they were on and then categorized as addicts.

This is a very serious issue. And when I see that the CDC will not even respond to the question about what about all the victims that are being dropped and forced tapered that opiates worked for and now they are suffering and this approach that all people who used opiates for a quality of life –

nana

Thank You for bringing this subject up. You are so correct.

Age and comorbidities work against pain patients.

Age alone is a comorbidity. As you age, bones kreek, muscle tone is lost and pain increases.

In all the studies I have read where long studies are quoted and increasing pain control is necessary often abuse is suspected it seems. Well I suspect increased age related pain should be considered. It doesn’t mean opioids or your pain control have less effect it means in some cases that pain has increased.

David Cole

Thank you Terri!
I’m one of those patients with several things wrong with me. I’m trying to manage the pain of peripheral neuropathy, a bone on bone arthritic shoulder with two tears in the tendon, a detached ankle that needs reconstructive surgery, arthritis in about every joint. I also have COPD and Crohn’s disease. Trying to have any kind of life was hard enough before they took over 2/3 my pain meds away, now I have to deal with anxiety, depression, grass and it’s starting to give me headaches. They’re slowly killing me. When the CDC admitted to overestimating RX opiate deaths by 50%, I asked 5 of my Dr’s and two RN’s if they knew anything about the discrepancies in the CDC guidelines, not one of them knew anything about it and my pain doctor acted like he didn’t care.
The only reason I’m talking about this is because there are no words on this planet that I can say to express my gratitude to Terri and all the other professionals trying to help pain patients.
Now everybody’s dying, pain patients are committing suicide, drug addicts are dying at Double the rate, and then there are good doctors being investigated for no reason by the time due process runs its course they lost their business, reputation and livelihood. However there are some doctors that have just turned into morons, they could have tapered pain patients and stayed away from the DEA, however they just abandon them, treating them like garbage and yet they were the ones that gave them the pain medication in the first place.
So I big warm hug to you Terri, the work you’re doing at some point in time will help millions of people.
Thank you form the bottom of my heart and God bless you and give you the strength to carry on.
David W Cole

Heather

If I lose access to pain medications, I will probably no longer be able to keep diabetes at bay because my activity level will drop. My mother, aunt, uncle, grandmother all have/had diabetes. My grandmother went blind, lost her leg to gangrene and was about to lose her other leg when she died from a stroke not long before my mother’s wedding.

There is so much that these Opioid Guidelines ignore. If I am less active, my quality of life surely will decline and I might face a shorter life-span because of my high risk for diabetes. Multiple health conditions are intertwined and complex. We are in the Dark Ages again when it comes to pain management and the inhumane treatment of patients.

Doctors need to advocate. They know better than politicians do.

billy Andrews

This post is very difficult to absorb. It may be of interest to a room full of doctors,but as a chronic-pain patient with “multiple chronic comorbid conditions”, I diddn’t really get your point,Dr Lewis,other than we aren’t being acknowledged as an element in this study.
I participated in the survey,thinking it may be of help.Now I see charts and percentages,but on my end,I diddn’t really get anything done,other than being on a chart being submitted to the federal government…THAT will get their attention !!
I’m not being critical of your article,Ms.Lewis,just saying it is clinical and emotionless.We in pain need to be heard.I can’t make it to Washington for the Punish Pain rally,but really want to be of use in some way to this cause.Any way we can use this information you’ve gathered in a more heart-felt way?
Thanks for your time. Billy

Gretchen

Thank you too Dr Lewis for trying too help and doing this survey

Tony Hardi

Just like with my insurance plan, I can do pain management for $400 a month or do massage therapy for $2500 a month and acupuncture at $1200 a month and massage and acupuncture therapy barely even helped me with the pain. So I can pay $400 a month or for something that barely helps $3700 a month. So which would you rather pay or can afford if you are disabled?? $400 or $3700?? That’s over $3200 difference in price of treatment. Think of it like this, a new car and you are making payments on it you have a new Chevy Viper for $400 a month or you pay $3700 a month for a new Hyundai Sonata. People not in pain and have no understanding of pain should not be telling people in pain how they should feel. Would you hire someone that has never in their life built anything to build you a house or a person who has been building homes for past 30 years build you a house??

Barely Here

I too have multiple problems from interstitial cystitis to broken s rews in my cervical spine after a failed surgery attempt … and anything in between! I have been on multiple different pain relievers including a morphine pump which died after 7 yrars. After 15 years of pain and supportive doctors for the most part; I was weaned to half of my medication in nust 2 months. No matter what I am feeling there is no one caring for me! My doctor refuses to see me because I am in pain. His teason for my medication fiasco is Florida’s 21 … Which limits doctors from prescribing more than a certain number of days of pain medicaion for someone who is not chronic. When I brought it to his attention that this had nothing to do with me … I was treated like a child and silenced!
I was baker acted twice now! I just cant take the pain and am completely out of answers and help! I will soon meet the rest of us who have had no good choices and probably been put in the books as an addict overdose!

I am done at 60 although I may have taken my own life … In reality they killed me!

Now print this so the world knows what is happening to us!