Barriers to Chronic Pain Treatment Shared with FDA – Part One

Barriers to Chronic Pain Treatment Shared with FDA – Part One

By Ed Coghlan.

The results of a robust survey authored by Terri Lewis, Ph.D. and promoted by the National Pain Report have been shared with the U.S. Food and Drug Administration in advance of the July 9th public meeting for Patient-Focused Drug Development on Chronic Pain.

“We received a significant response from not just chronic pain patients, but from doctors and caregivers,” Dr. Lewis noted. “It showed that many people are hurting and are being left out of the conversation. This is the message the FDA needs to hear.”

Nearly 1700 people responded and all 50 states had significant participation. 80% of the respondents were women and most were in the 40-to-65-year-old age category.

“What was notable was there was an average of five comorbidities from people who had been ill for twelve years,” she said. “There are 25,000 lines of comment data where people could tell their own stories.”

We are going to cover Dr. Lewis’ submission in two stories.

In part one- we will review the barriers to care that were revealed in the survey that have been shared with the FDA. (In part two—we will look at some of the recommendations that Dr. Lewis gave the FDA which will be part of the testimony for the July 9 meeting and will become part of the Federal Register.

Here’s what she found (and we added a quote where appropriate from a survey respondent that further describes what she called the barriers).

Barrier 1: Insurance problems figure prominently throughout all systems

“I have no care team. I rely on my primary care doctor for my medications. I am poor, have no-one to help me and my insurance does not cover any extras.”

Barrier 2: Regulatory interference in choice making is destabilizing care and treatment of chronically ill persons with multiple comorbidities

“I would love for my care team to consider my input and needs in my care. But they are now more worried about the CDC guidelines and getting in trouble with the DEA. I’ve had my primary care doctor and my pain management doctor both tell me as much.”

Barrier 3: Physicians are retrenching from traditional roles in providing care

“I tried to educate myself is much as I can and a value doctors who are willing to work with me on my health instead of dictate to me.”

Barrier 4: Risk stratification is now based on determining whether the physician can avoid the DEA by balancing the caseload to serve <90 MME criteria (based on assumptions about addiction thresholds) rather than serving confirmed patient needs for specific disease progressions

Barrier 5: The increase in serving physician administrative requirements has broken communication and the Dr./Patient working alliance creating a polarized environment that has increased adverse patient outcomes.

“I would like ONE computer system so ALL of my Doctors can see my records can communicate with ease & cut down on repeat tests.”

Barrier 6: The practice of pain management has suborned ethical care based on medical necessity to risk avoidance and increased attention to dispensing of procedures designed to increase revenue in a shrinking environment

“In the past at pain management, I received injections of different types as well as my pain meds. I stopped going due to the fact that in order to get my pain meds I was basically required to submit to injections that did not help with pain.”

Barrier 7: Across the nation, physicians are fleeing private practice due to regulatory interference and hospitals are closing, factors which affect affordable, accessible, integrated care – particularly in rural areas.

“I have to travel 450 miles one way for a pain doctor that understands CRPS/RSD. I really wish there were someone closer that could take care of my prescription needs for a quality of life.  Making the trip is very hard & puts me in a flare.”

Barrier 8: The acute model of medical care fails persons with multiple chronic conditions and leads to increased allocation of interventions which fail while increasing utilization and costs.

“I don’t have a formal “care team”.  My “team” is made up of my family members, my physicians, and my pharmacy.  When needed, I can get home nursing care.  All of that requires some coordination and we work together to get things done.”

Barrier 9: The persons most affected by the decisions about are excluded from having a seat at this table and design of inputs, activities, results, outcomes, impact measures.

“Affected persons” are persons with multiple chronic comorbid illnesses (2 or more confirmed conditions that require care), their care partners, and family members.

Dr. Lewis pointed out in an interview this week that the voices of the chronically ill are not often heard. She believes this survey is a starting point to gain more information from the field to educate the government, insurance payers, medical providers and patients about what is “really happening to these folks.”

“These are clearly not the people that (Dr. Andrew) Kolodny has targeted,” she said. “These are people who have complex illnesses and often need palliative care and just aren’t getting it.”

In Part Two—we will review Dr. Lewis’ recommendation to the FDA.

To register for Public Meeting on Patient-Focused Drug Development for Chronic Pain, click here.

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Authored by: Ed Coghlan

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Marcus

Hello to all my CPP brother’s and sister’s, this is my 1st time and may be my last time posting to this blog. I copied & pasted my last MRI finding’s so as not to mislead anyone about my condition that has gone from manageable to the horror of living daily each morning wondering how I can just take the 1st steps to get out of bed?

At L5-S1, there is previous displacement and posterior fusion. There is
significant bilateral facet arthropathy, stable. There is moderate to
severe left neural foraminal stenosis secondary to the facet arthropathy
and residual lateral disc osteophyte complex, stable. There is contact of
the exiting left L5 nerve root. There is moderate right neural foraminal
stenosis, stable. There is epidural fibrosis within the right greater than left lateral spinal canal which is not significantly changed when compared to the previous examination and
does not appear to contact the L5 or S1 nerve roots.

I am so frustrated, confused, depressed and dejected by my 12 year a slave to pain and misery from my spinal issue and now I’m told I need double knee replacement due to tri compartmental bone on bone in my knee’s!!!!

Well after all this, and this is only 2 of 4 conditions I deal with daily, It is demanded of me to lower my only means to walk or sit, stand and be a normal human being with a life worth living by reducing my medication down to a quarter of what I was taking and almost keeps me from getting sick, however “NO PAIN RELIEF” anymore?

My PM Doctor, sorry I can’t continue now, i’m breaking apart at this moment, so sorry!!!
I need help!!!!

Marcus

Nancy

I’m so glad to find this site. I thought maybe I was the only person who was having issues. Im a 56 year old woman with systemic Lupus – pain everywhere almost every day I’ve been going to pain mgmt for 8 years and been on Percocet and Fentynal patch. At mu July 3 appointment the patch was taken away to stay within the 90 mg morphine equivalent. Great now what? The meds helped me live half of the life I used to know. Next month they are going to reduce the Percocet. Maybe I’ll go on disability so at least I won’t have to work or even get out of bed. Thanks FL and thanks DEA.

Sharon

I apologize for not explaining the whole medical diagnosis that first caused the pain that nearly took my life. Too much to explain and it’s only progressed. Chronic Pancreatitis which, as I said only got worse and more chronic diseases have risen along the way.

Sharon

I too have been suffering from multiple chronic diseases from which I accidentally overdosed on Tylenol and my spleen ruptured and my liver and kidneys failed. I wasn’t expected to live through the night. That was 20 years ago and I was in the hospital for 10 months. I didn’t know what I was doing and the doctors didn’t try to find out what the problem was until I basically died. Afterwards I received a morphine pump and for 13 years I was good along with breakthrough drugs. It had to be removed because my body was pushing it out and had to go on oral maintenance meds. After figuring out what worked for me again I was good until the opioid crisis. I have nothing to do with the fact that drug addicts, looking for a high, are doing so and it’s affecting my life almost as much as my disability has, in a different way of course. I am working closely with my Pain Management Team and all the doctors that care for me. It now affects me emotionally much more than ever. A Pharmacist questioned me and my everything? Why this and why this and why??? She had me questioning myself, until I got angry. You just don’t stop a 68 year old survivor from treatment after 20 years and tell them, We can no longer treat you. They’ve cut me down to the maximum. By the Grace of God I’m alive and I’ll fight for all of you who suffer from any chronic pain. I can’t work or…..but, I have FAITH.

Eric Burnette

After a motorcycle accident, I’ve been through multiple back surgeries, physical therapy, epidurals, ect over the last 13 years. After years of suffering I was referred to a pain specialist and that’s when I finally got my life back. For almost 10 years I was able to have somewhat a normal life until last year when these new regulations were passed. My medications have been lowered so much, I don’t know if I’ll be able to work and take care of my family much longer. IMO Everyone pushing this agenda should be put in jail for hurting innocent people.

Colleen Holbrook

I have a well documented case since 2005 that I have CRPS. Since that date my CRPS has spread to my left ear, my upper back, both arms and hands, both my legs, along with peroneal neuropathy in both legs which means two smaller branches off the sciatic nerve don’t work, myofascial Pain Syndrome, median nerve neuropathy in both arms. CRPS is rated in the McGill pain scale higher then cancer. I’m not knocking cancer but what right do you have to determine if I need it? Illegal drugs are the problem. Not us! Now I’m being told I have to come down more on pain meds and that I’m not allowed now to have muscle relaxers and sleep med. So all of you think I should be made to suffer and everyone else who suffer? I will take of me! Oh and the Governor of AZ sent an email that it doesn’t apply to me but my pm dr says the government over rules his supposed laws! You guys are sick! Walk a week in all of our shoes!

Tina

I have been suffering with CRPS for 3 years . After my diagnosis I was sent to a pain management Dr who I thought was going to take care of me and who hady best interest at heart. He did injections in my spine to try to help and after 7 we realized it wasn’t working. I tried physical therapy which just made things worse . so then I was told about the spinal cord stimulator and I tried that it worked for a few months but then things went wrong and I started to get back pain and it started to shock me and I was losing weight fast. They finally took out the one wire as I was unble to turn it on without being shocked. Even doing this did not work to fix it to make the scs work to take away my pain the battery stuck out so far and brusied me constantly. I had to get it out as I couldn’t lay ony back or left side. Now that it was out the pain management Dr is telling me that he doesn’t want to treat me anymore. Saying that he will not just be able to give me my fetanyal patch and hydramorphonefor breakthrough because he doesn’t just do medications. Now mind you he has been doing just that the last 2 years. I ha e been looking for a new pain management facility but because I have already done all the treatments for CRPS no one will take me. The ones I do find tell me I have to come off my meds because they don’t know what CRPS is!!!! I am not a drug addict I have a pain disease with the highest rated pain there is and now no one wants to help me. There is no cure and I’m supposed to go on the rest of my life alone with no medication or help because the government is cracking down on people who have overdosed? Well that doesn’t seem fair as I’m trying to survive and get by as I’m a single mom with a daughter to raise still!!! I need help not Doctors stutting their doors on me all because they are not getting a kickback because I am not getting a pain pump or a scs!! Whatever happened to doctors who cared about people!!! I can’t even get my wheelchair i need because the insurance company is too lazy to read paperwork to see I have tried other devices!! I can’t walk or push myself in a wheelchair and yet I only have a cane which I have fallen with time and time again. What is wrong with this country!

Terry

I hate to keep sounding like a broken record and repeating myself but it’s hard for me to advocate for future chronic pain patients when my own situation continues to be hopeless at best. Short version: I have MULTIPLE conditions that cause long term, incurable, widespread pain. Originally I was ultimately prescribed 200 mg of oxycodone daily. Now it’s 75 mg and it barely helps my pain, so I have anxiety, depression, pain, and no options for improvement. My meds have already been reduced so drastically and so fast that I went through horrible withdrawals. There’s absolutely no way that my meds will ever be reinstated to what they were originally, when my life was full, happy, my pain under control, socially active, I cooked, I cleaned, I did yard work, but that’s all gone now, so for me to raise awareness, be an advocate, fight the good fight for all my chronic pain brothers and sisters, I can barely get through the day. I am defeated and the DEA has won their crazy war on prescription pain medications for legitimate chronic pain patients. I don’t have a dog in this fight. I guess what I’m saying is I don’t care anymore, there’s nothing that can help me, except reinstating my prescriptions to the correct, proven amounts from before all this mess. So I’m surrendering, I give up, my life sucks and I can’t fight anymore. I’m sorry to let everyone down, I fought like crazy for us and now I’m waving my white flag. So even if the DEA/CDC change their guidelines back to what they used to be, current chronic pain patients, myself included, have NO chance of getting their pain meds back. Doctors will just NEVER do the right thing, it’s over. Good luck and prayers to you all and I AM sorry. God bless you all.

Do forgive me, I thought this was iJuly the fourths story. It’s been a long day….

Excellent story, excellent responses. I pray all doesn’t reach deaf ears and heartless hearts. I can’t help but think today being the Fourth of July…Independence Day; of how many of our veterans are laying suffering by their selves. A few people have sent me happy Fourth of July text messages. When I searched to send one back with a picture and a song it was very hard to do. What used to take seconds took an hour. Hearing all of the Patriot lyrics about this country and how grand it was “supposed to be” and how proud we are “supposed to be of it.” Let’s just say the pain in my heart today is a 10 and then some… may God help us all.

David Chamberlain

I concur wholeheartedly. The comments below are devastating. My primary Dr. who was exceedingly gun shy re. necessary opioids left for Emergency Medicine. Treat ‘em and Street ‘em! I have bone cancer but I am hooked up with a great Cancer Ctr. and they are not gun shy, in fact they basically say to Sessions “[edit]

Tracy Cabanting

First, a big THANK YOU to Dr. Lewis and Ed Coghlan! You two are giving us a voice!
Second, my heart goes out to all of my Brothers & Sisters in Pain!! Let’s keep telling our stories and fighting! Let’s keep supporting each other!
There are so many amazing and wonderful people in this Chronic Pain Community and you’re all in my prayers!!
I hope the FDA LISTENS AND HEARS US!! Things need to change! We deserve and need care based on each of our individual needs, tolerances, and what our DOCTORS think is best! Our DOCTORS should decide what pain meds we get and how much! There is NO “magic formula” that’s going to work for everyone!
Since my meds cut back in January due to new Nevada State Laws, I’m MISERABLE!
I just want my pain meds back! I wasn’t hurting anyone or breaking any laws!! I’m just trying to get through this constant, terrible pain one day, one minute at time!

Susan

Much of the pain currently treated by opioids could be treated by true CBD oil and or medical marijuana. For those who aren’t aware CBD oil is separated from hemp and doesn’t contain THC, which is what causes you to feel high from marijuana.
Unfortunately I live in a state, NC, that doesn’t allow Medical marijuana in any form including the CBD oil. I would much rather try that and lower or stop my pain patch. It has been recommended buy a few of my Physicians even though they can’t prescribe it. And CBD oil, if it works for you, is much preferred to permanent long-term opioids.

Susan

I already have had problems continuing my pain management for over 2 years. I live in North Carolina where there are no additional restrictions, yet. However, my Pain Management Group, which has 8 outpatient facilities and overseas 7 Hospital’s was bought out 2 years ago by the largest anesthesia company in America. As part of that buy out new rules were implemented. One of them was if you get any narcotic prescription and miss 2 apts in a 6-month time period, no matter what the reason, you were completely dropped as a patient. So not only can you not get your narcotic medications, you can’t even continue your non-narcotic procedures. The doctor has no choice. I have an office visit every 3 weeks to receive marcaine (a medication that numbs-a non-narcotic) injections in both my hips. I have done these injections for over 15 years and continue them so I don’t have to use additional oral narcotics. I do use a duragesic narcotic patch every 3 days, Baclofen and Toradol. Because I spent 208 days in the hospital last year, I missed (rescheduled) 5 appointments. If I was receiving my duragesic prescription from my pain Dr, I would have been dropped as a patient-even though I could prove I was in the hospital during those reschedule appointments.To keep that from happening we have a pain management plan but one of my other Dr.’s actually writes the narcotic prescription. That makes absolutely no sense.
I have an extremely aggressive and rare form of CIDP along with 4 comorbidities. When I got sick, my life expectancy was 3 yrs and I have fought & survived 17 yrs. I pay a big physical consequence to stay alive. I am hospitalized 8 days every month to receive a drug that keeps me alive. I also have multiple unplanned hospitalizations for infections, exacerbations & complications from disease. The last thing that my Dr.’s and I need to deal with is worrying about the 1 narcotic script that I need each month.
The new CDC guidelines & new individual state laws are scaring even non pain management Dr’s who write narcotic scripts. We have no idea what to do when my other Dr’s become concerned about writing me a script with the new restrictions. Where am I supposed to go?
What happens to me when I end up in the ER with an acute medical issue(NOT a pain only issue-in 15 years, I have only gone to the ER 1 time for pain only) that needs treatment and pain meds? The ER Dr is afraid they will have a problem. That is scary!

Maureen M.

Thank you Ed. I did the survey work for Dr. Lewis and I surely appreciate all of the work that Dr. Lewis has done and continues to tirelessly do for us.
Maybe it is me but this post somewhat confuses me.
I’m still waiting for something to really really show the sufferings we live with and I’m just not seeing that being revealed in breakdown message to the Gov’t.
I hope that I am wrong. Our barriers ar far far greater than what I read above.
Im praying that the meeting on the 19th will give a very powerful
message of our truth to them.
Best of all to Dr. Lewis.

Kathleen

STILL no talk about the REAL problem, HEROIN/FENTANYL – the ever present, and easy for junkies to get, is the issue and always has been! Somehow it was switched to legal rx’s cause they can find us and stop our care for no reason. As cpp have been through abrupt stop in their medications with no reason why, forced to suffer needlessly, junkies have been able to call their dealers for a fix!! The USA is catering to the heroin addicts and condemning cpp who have no hand in the ilnesses we have.

NOW, because this has gone so far off the wall, my doctors medical insurance company is the dictator of what meds I can have and how much! Told to take patients down to what we say or an increase in premiums!! HOW CAN I FIGHT THAT?

I am ashamed to be an american…and I will not capitolize the word ever again. My country is killing me and no one cares. NO one!!

Sharon C.

For anyone living now with chronic pain, it is the worst of times. The PA who sees me at a pain clinic, wants nothing more than to stop prescribing opioids for me. Last month, she took away hydrocodone. I am now on a Butrans patch, the lowest dose. All l do now is scream from pain. I don’t go anywhere. I try not to move in bed. CRPS is an indescribable nightmare. My calls to the pain management office are not returned. This is intolerable.

A. MacKenzie

I do hope this all results in recognition of and publicizing the fact that certain people do need to use opioid medications to relieve chronic pain for which there is nothing else as effective, such that we are not demonized and denied our RIGHTS to these valid, legal medications. This nonsense about such people being drawn into this fake opioid “crisis” (I mean “fake” with regard to people who use such medications validly as prescribed by physicians) needs to end NOW. This whole thing has been ginned up by the media into a frenzy and everyone seems to want to “jump on the bandwagon” and ban opioids … that is, those who don’t suffer from chronic pain or have a loved one who does.

My story is started in 2004 I was working as a medical home care social worker and while going to and from patient’s homes I was involved in a minor car crash,or so I thought. This began my descent into the many layers of hell that was to become my new life.
Fast forward through all the rehab, work nonsensense, PAIN, workers comp, auto claim, all the losses…marriage,friends,job,your life. My boys who are young men now lost their “amazing” Mom.
I warrior with fibromyalgia, chronic fatigue, arthritis, nerve damage, chronic pain related to inoperable shoulder/neck/back damage. Of course the depression, anxiety and PTSD.
Not the way life was supposed to be.
Michigan has put very strict barriers on all pain management even Lyrica requires a monthly visit to your Dr. I made a personal decision to wean off my pain medication a month ago before this state mandated nonsense began. I was not going to be classified an addict because in my state currently that is what anyone being prescribed ongoing or multiple meds on their hit list is being deemed. I am of course suffering greatly but am blessed to have a primary care dr. for +20 years that is also a pain specialist that has been working in addiction for so many years. He is an advocate for patients, works long days, very frustrated with the system, we have great discussions about theses issues and he is trying to use non narcotic to help me but will put me back on my pain med if i choose. As This state cannot figure out who is a pain patient vs who is an addict?
Michigan has a heroin problem But it is my opinion as a professional and a patient that the government’s approach will make it worse. I have now concrete evidence,small but true, my dr. told me that he has since admitted in the few recent weeks 3 people in their mid 70’s to rehab for heroin . These are people who were pain patients, no history of illicit drug use,but because they can’t get to their Dr every month or afford that script sometimes weekly now by their insurance they were preyed on by neighbors who said they could help in a cheap way…now they became real addicts. I guess this is how great America has become?
I wish all of you my fellow warriors of pain, often too weak for a fight, may we all have some good moments though small, remember you are not alone and continue to fight when we can and challenge those around us to fight for us and our right to have dignity, choice and continued freedoms

Bruce

I can vouch for having a needle stuck in me in order to get my prescriptions. They actually withhold them until I go across to the surgery center for the procedures. They’re taught to argue with you until you give in. Ridiculous.

Sam Pringle

I suffer from spinal stenosis..inflamed sciatic nerve..frozen shoulder..fibromyalgia.neuropathy..I am 10 years on pain meds..without them I could not have a normal life..as it is I still have break through pain which can be so shocking it takes my breath away.
4 months ago my meds were reduced due to government interference…I have had 3 epidurals in the last year with some relief…the doctor says i look top good to be so ill..I walk 3-4 miles a day with our dogs.
Swim and walk in our pool..I try to keep busy and not think about the pain.Sleeping is limited to a few hours down..then up.
I manage to nap an hour or so daytime.
I’m not very happy with the feds trying to regulate my meds without even knowing me..

Cheryl Beane

I am relieved that someone is finally taking in consideration to how we , acute pain sufferers feel . I have suffered for over 15yrs with chronic pain .I have tried everything ,injections , physical therapy, water therapy, chiropractic,&surgery. None of which worked .
My pain started after a car accident in1998.The pain has increased year after year, but through pain management , and my opiate pain medication, my pain and suffering have made my life tolerable .
The pain management clinic and the doctor who has been treating me for the past 8yrs ,are very strict .Patients are subjected to urine tests ,and patients don’t know when, to make sure we are taking what’s been prescribed. I have heard this is to make the patient is not selling their medication and to check that there are no other unprescribed or recreational drugs in their system.
You see every patient must sign a contract agreeing not to do any of these things or it will result in dismissal.
Lastly, every time I take a pain pill I write it down and the time.If everyone did this, maybe it would cut down on a lot of overdoses !

Government has slowly taken over the practice of medicine in the US.
Regulators have incentives to avoid risk because to “allow” and then “success” gets them little but if something goes “wrong” they get blame and career damage. The regulatory culture is therefore slow to approve new treatments, it encourages cover your butt unnecessary, costly reporting requirements and uses threats to change what it and powerful special interests determine are requirements to practice, prescribe and treat.
The result: high cost of routine medical care and presciptions.
The political response: calls for more government interference or a complete take over of medicine rather than looking at the systemic causes.

Debbi Chetner

I truly hope that the CDC, DEA, GOV’T will wake up soon and stop scaring Drs for prescribing narcotic pain medicine. I moved to another state and for 3 months have been dealing with unbelievable pain. It’s a 12 on the pain scale. In my previous state my primary could prescribe the low dose Oxycodone I’d been taking since being hospitalized and in a nursing home. My Dr and I worked together to find the right dose to manage my pain and give me a quality of life and be productive. I can’t work, but being able to be a functional housewife and grandmother was enough. In my new state I have to be referred to pain management which I have no problem doing, but a 6wk waiting period for an appt has me back to where I was 3yrs ago. If my appt doesn’t go well and I’m not prescribed my pain med, I might have to travel the 16hr roundtrip and see my old Dr. I jumped thru so many hoops so far and it’s just wrong. I’m a responsible adult and have never abused my meds and my records speak for themselves, but apparently that doesn’t mean much in Ohio with their Dr’s.

Vesta Ard

Thank you to all who care enough to take the time to help those of us who work hard to live with chronic pain. As my husband says, “It is a full-time job”.
For decades I was a hospital-based RN, educator, mother, mentor, community and church leader, caretaker of elderly parents, forgein exchange student host, Master’s Commission Mom, Advanced SCUBA diver, swimmer, dancer, political change agent, student, and so much more. I, like the rest of the Chronic Pain Community, contributed much to many, and still do, just differently. We are voices to be heard and we will be heard!
Thank you for starting the discussion.

Cheryl Ford-Marosi

As a retired RN It is absolutely appauling to me to see how lawmakers have involved themselves in medical practices which now affect the lives of so many chronic pain sufferers. The administration opiods have helped way more people in this country in comparison to the minority that the drug has affected negatively. The Feds are wrongly interjecting their lack of practice in patient care and medical practice, placing the fear of God in millions of physicians throughout this country. This is communistic and wrong. No one has spoken out against the horrific affects that are occuring right now after the immediate removal of these medications from people who have comfortably and safely been prescribed these medications for decades. Federal lawmakers have mandated laws without the medical know withall as to what critical situations they have placed millions of elderly and others into. What in the name of God are you people trying to create? The next SUICIDE CRISIS?

Sondra Glenn

Fantastic! It sounds like the FDA meetings will be more informed and really care about what is happening to us chronic pain suffering patients. The CDC has been responsible for adding an abundance of fuel to this already existing nightmare that was started by the DEA. The CDC retracted their numbers of overdoses by opiods but don’t bother to correct it each and every time a report comes to light. We are chronic pain patients. We are not addicts. We have tried everything alternative to alleviate our pain before going on pain medication as a last resort. Now you want to strip us from having any life whatsoever! And that is what is going to happen if we lose our medication. Except for lose that can’t endure it. They commit suicide. I must add that their blood is on the government agencies hands. Primarily at this point, the CDC. And they don’t even seem to care!

Cathy Adams

I’m so glad that someone is finally speaking up for patients with complex, chronic conditions that require a wide variety of options in care. I am a 3 time cancer survivor having first been diagnosed at 17 years old with Hodgkins Disease, a relapse at 20 years old and the third time was breast cancer at 40. I had massive radiation the first time in 1981 and chemo ( ABVD then Taxotere and Cytoxin ) for the second and third times. This treatment absolutely saved my life, but it also severely damaged my heart, caused breast cancer, and resulted in severe damage to the cartilage, joints, discs and bones of my lower back and hips. I have had intermittent interventional pain treatment for 20 years until my issues became so severe that I now require chronic pain meds and frequent spinal and hip injections. My doctor is severely hampered in the options he has to treat me and other patients due to the CDC guidelines.
At this time my pain meds MME falls below the CDC top limit, but what happens when my back continues to degenerate? Its not going to improve, only get worse. Why can’t my doctor treat me with whatever meds he and I determine work best and in the doses be feels safe necessary?
Medicare already limits meds to a very short list of opioids and muscle relaxers and doses that are slim pickings to choose from.
Please allow the pain specialists to sit at the table and assist in developing the formulary that works best for their patients.

Lee Schaefer

So little is said about personnel issues dealing with cronic pain. We are put through barriers, I honestly believe they do this to a point were they want you to just give up on your treatment and just live in pain. I am thinking of moving to another country were pain patients arent considered criminals.

David Cole

Thank you Mr Coghian for keeping us up-to-date on what’s Happening in the world of pain.Terri Lewis’s work for chronic pain patients is starting to pay its dividends, she is a true American Patriot and so are you. I just like to say thank you from the bottom of my heart to both you and Terry for your fight for people with rare diseases, chronic/intractable pain.

Shannon Riggle

I find myself trying to function daily in alot of pain.Its hard to do normal things.There surely should be some different approach for this .I cant function with tolerable pain anymore.Its 95%of the time unTolerable

Cindy

I am encouraged to see this article, as I am one of these patients listed above. A few years ago, I was finally, after 10 years of misery, diagnosed with lupus, possible mouth cancer, and broke two bones in my lower leg within three weeks of each other. I have since been discovered that I have herniated disc in my back, in my neck, and have Raynolds disease, Sjögren’s , fibromyalgia, chronic fatigue syndrome, And all the myriad accompying things that go with them.

Burning pain in long bones like you rubbed it with sand paper and then squirted lemon juice on them and then rubbed salt

Aching in joints like 5x the flu but never goes away
Especially in my feet.

Ulcers and rashes across face eyes fingers throbbing like you shut the car door on them etc

Pain scale without meds 9/10
With3/4

My life is endless rounds of drs and insurance company phone calls to deal with even regular prescriptions much less my pain meds.

Without them, I have no quality of life much like my fellow travelers. I am blessed
That my primary dr refuses to back down from the govt. she says that she’s the one who sees and touches us. We do have to take blood and urine tests to comply for whomever and that adds hours to our visits plus her manpower but it’s required

I feel ashamed and frightened to think what has brought me back to life will be taken away by people who don’t delineate between addicts and patients

Heather J

She also keeps pushing me to go swimming. I go to a gym that’s a 5 minute walk from where I live. I don’t drive, so in order to go swimming, I’d have to get on a subway car, get on a bus, change clothes at the pool, dry off well enough that I’d be able to board a bus home again… get on the subway… When I said that I don’t drive because of fatigue, she said optimistically that maybe I can start driving.

I almost cried. I complained of sleep issues, said I don’t drive because of fatigue… When I said that I was having difficulty with sleep, I got a cryptic answer. Every time she sees me, she pushes me to swim, and I push myself harder at the gym. I now have a foot injury (plantar fasciitis). I enjoy working out at the gym and was having a good day, and I over-did it on the elliptical. I do feel pressure to do more, because I want to be a compliant patient. I am dreading the next appointment because swimming would be the “perfect answer.” Ugh.

I used to see another doctor in the practice but she’s left to help people who have acute injuries… she’s the one who referred me to the doctor who does acupuncture. I wonder if she chose acute injury care because of the pressures of whether or not to prescribe opioids. She had met all my needs and we had a great relationship.

This is the physiatrist’s practice that I’ve been talking about.

I was encouraged to see a rheumatologist who I’d seen years before for my osteoarthritis but whose care was made redundant by the physiatrist. This rheumatologist had been the one to originally prescribe the opioid. He also had prescribed near the max dose of Soma at one point (I chose to discontinue it when I found an alternative treatment). Well, now the rheumatologist is saying he doesn’t like the opioid that he prescribed to me for YEARS without much comment.

What changed? Is he kidding himself?

My dentist sees my med lists and starts telling me, unprompted, about medical marijuana. I had three fillings done without numbing (didn’t need it, truly), and never once mentioned pain. There is definitely a new level of stigma thanks to the guidelines.

Susan

Excellent article! Thank you to all for enabling this information. Special thanks to Dr. Lewis for her contributions re the pain surveys and dissemination of much needed data in advance of the upcoming mtg with the FDA.

Heather J

Thank you for this. I feel grateful but sobered by seeing confirmation of these issues. The impact this has already had on people’s lives… and their deaths, cannot be retracted. I used to expect help from my doctor, and now I’m afraid of losing access to medications that help me financially support myself. Other people are worse off.

I am pretty sure that if I tried to switch doctors now, I would lose access to meds. I started seeing my current doctor because she does acupuncture. I had a treatment and didn’t respond well — in fact, I felt achy. The doctor thought I might be sensitive and she would need to start more slowly with me. My preference is to continue trigger point injections instead. I tried to connect with another doctor in the practice and he said he “doesn’t prescribe pain meds.” He said he just sends people to physical therapy (really?). Otherwise, he seemed like a great fit – very knowledgeable. He offered to consult but not to prescribe. I don’t have that kind of $. I saw the nurse practictioner because I couldn’t get an appointment with the doctor who did acupuncture (she’s overbooked already). I asked if the nurse practictioner could take me on, and she was reluctant — she was reluctant to prescribe, even. It was partly because I’d seen that doctor who told me he only sends people to PT.

I’m not doctor-shopping. I have some communication issues with the doctor who does acupuncture. I told her I was having trouble with sleep and she said, “You’re smart, you’ll figure it out.” What…? It felt cryptic and frustrating because I was trying what I knew how to do — and I know that sleep is the number one thing that impacts my pain and cognitive function.