Opinion: Are Things Changing in Chronic Pain?

Opinion: Are Things Changing in Chronic Pain?

By Ed Coghlan.

It’s been an interesting month.

A plucky group of Oregon chronic pain patients—with help from a prominent Stanford pain psychologist—seem to have staved off (for now at least) a proposal by the Oregon Health Authority to force taper Medicaid patients off opioids.

The proposal, which has been heavily criticized by pain physicians, national pain leaders, advocates and patients, was born from the national dialogue that opioids are addictive and need to be expunged.

The proposal won’t come up again before December.

What has been missing from the discussion—in Oregon and across the country—is the point of view of the physicians—many of whom have been cowed by the pressure of state and federal governments who have adopted the “opioids are bad” mantra.

By the way, that Stanford pain psychologist–Dr. Beth Darnall–is leading a voluntary taper study of 1400 pain patients in four western states that is designed to have the patient—and not the government—at the heart of the study. Patients who want to reduce their opioid intake have a chance to do so, not because the government says so, but because they want to.

The operative word there is “want”—no patients are being forced to taper their opioid use

Then, from 350 miles south of Stanford, came word of an attempt by a group of California medical, patient, and advocate leaders to create a “pain strategy” for the state of California.

The Pain Summit will be held November 2nd in Los Angeles with the goal of creating a state pain policy that will be presented to the Legislature, intended to address the need for more physician and patient education, promotion of more insurance coverage for pain procedures, and other patient-centric proposals.

As one Summit organizer shared with me recently, there are fifty pain policies that need to be developed (one for each state).

“California leads on many things—this patient-centric pain strategy will be developed not only to succeed in California, but for people in pain no matter where they live.”

And then there’s the federal government.

The U.S. Department of Health and Human Services Pain Management Best Practices Inter-Agency Task Force will release its chronic pain recommendations at the end of October.

While there is no guarantee of what the federal government will recommend—the issue of “what is best for the patient”—dominated the discussion of hearing recently.

So, is there an answer to the question we pose – are things changing for those in chronic pain?

The answer is maybe.

The voice of the patient in Oregon, in California, in any state you live it and, of course, with the federal government, is critically important.

Share your “voice” with us—but more importantly—share it with leaders in the state where you live!

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Authored by: Ed Coghlan

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Wendy Sinclair

Thank you for the article. I’m one of the ones mentioned in Oregon, too. We have seen some progress from all the noise we are making, but we need so much more. Keeping our voices alive and active and beating down every door, is so important. Let’s keep up the fight!

kelly

As one of the “plucky group of Oregon patients,” I have to say thank you for the mention & the hopeful take on things. I sure hope you’re right, tho after months of way too much time spent learning about & getting ready to testify before the Oregon Chronic Pain Task Farce, I gotta admit my own optimism is at low ebb. I suspect the group was surprised by the strength & makeup of the opposition & they’re hoping everybody sorta forgets about it after a while, when they’ll go ahead & do what they were planning anyway. I also think they really had it in mind to sneak the whole plan in & make any opposition work to change it after the fact…& they very nearly succeeded. The Task Farce has been remarkably creative in underhandedness, I’ll give ’em that. The leaders of the plucky Oregon group have been amazing in their diligence & dedication in fighting the group, and I’m honored to have been able to help them.
Another big help in the fight has been the Independent candidate for Oregon governor, Patrick Starnes. He’s not a CPP, but has been amazingly active in our fight and actually seems to be a decent person –not something I say lightly about politicians, even aspiring ones. But he’s taken considerable time & effort to show up at several rallies & hearings, & tried very hard to get the Task Farce to add a couple of members that really understand chronic pain, such as a CP doc & a CP patient (the TF did add 2 more members, but they were both more of the same, already on the wildly biased side of the other members). I haven’t actively campaigned for anyone for anything since John Anderson in 1980, but Oregonians should pay attention to this guy…I think he’s for real in not wanting blind, greedy, power-hungry people in power (no, this is not a paid political ad; I talked to him at fair length at a number of the rallies & hearings, & think he’s as positive as it gets in politics).

Jill

Although this sounds somewhat hopeful and I’m grateful to Ed and all who are trying to advance our fight for the right to live, I’m feeling just like Barbara. My pain is reduced for a few hours with my allowed Norco but the dosage is too low to really help. And I am beyond tired. Perhaps this is the reason more of us can’t fight the battle. The fatigue of my progressive disease is as debilitating as the pain. Over the last decade on opioids I’ve detoxed 3 times to reset my tolerance. People may willingly join Dr. Darnell’s study but unless their source of pain disappears like me they won’t be off them long. There’s a reason we need them. We are in pain and they help. So simple.

Kristen

I try not to think negative but it’s very hard especially today when my pain is extremely high and I can’t get out of bed until my med kicks in. I have been on same pain med for about 8 or 9 years and like other CPP i am wondering what will become of me if and when I am no longer prescribed them.I have an exceptional Dr.,she listens,ask questions,shows concern and is very compassionate.I honestly don’t know how I will function without my med.I have gone to Pt 5 times,massages,etc that left me in worse pain than I am in.I feel for everyone who is Suffering.We all deserve some quality of life.Now I just read Ohio is trying to ban CBD Oil! I do not live in that State but I am asking myself what next is on the Govt Agenda to destroy us even more than they already have.I am Thankful to everyone who has advocated on here.I also have written letters to no avail.

Kathleen Ganley

I was told by my doctor and I have read that as of Jan 2019 patients can only be prescribed 90 mme per day of opiod meds. I live in Maryland but I thought this amount was coming from the federal government guidelines. Is this true or not? I hope someone reads this and posts a comment about it.

Kimberly cornilsen

I think testimony from law enforcement on what the real opioid epidemic, would be very valuable

Aaron Zywicki

Thank God Somebody Is Fighting For Chronic Pain Patients ! Why The Government Is In Our Medical Establishment Is Beyond Me ! What The Government Does Not Reliaze Is That We Are Parents ,Fire Fighters , Construction Workers , Teachers ; Waitresses, Blue Collar People That Work Hard Jobs ! Delt The Hand Of Chronic Pain ! And Still Have To Perform And Provide For Our Family !

Lauren Gilbert

I live with chronic pain daily in so many different parts of my body that you need a calculator to keep up with it. I attend a pain clinic in the state of Georgia according to Georgia law. That is according to Georgia law as of today. I have been 100% disabled since 2005, and finally in 2013 I was found 100% disabled by the Social Security judge and put on early retirement since I was 61 at the time. I live on my social security disability, and with the help of the pain medicine that I get every month from my Dr as well as shots for different areas of my body that will benefit from that, lately I have actually been able to take on a part time job that not only adds to my measly $980 a month that I get in my government check, but finally for the first time in almost 6 years I can actually feel like a productive member of society. Without these medications I wouldn’t be able to get out of bed. I am already regulated by the state with monthly urine tests to make sure that I’m not taking anything other than what I’m supposed to be taking, not to mention the Statewide if not Nationwide pharmacist Network that keeps track of what somebody is getting and in fact goes so far as to determine (get this) whether I am taking too much opiate which includes my medication for an anxiety disorder which I’ve had since I was 15 years old and any other medication they deem to be part of the opioid problem. I don’t know how they decide just exactly how much is enough or too much for me since they don’t know what my weight is, how long I’ve been on the medication, how quickly my body dissipates the medication (the 12-hour meds don’t last 12 hours and the 6 hour meds don’t last 6 hours) but some Brain Trust either in Atlanta or in Washington or probably both have decided on a number that works for them. The laughable part is that this can be overridden by the doctor. So my question to that little issue is what’s the point?

Jeanne

I would like to go back to having my private patient centered/Doctor relationship. I don’t think anyone should have the “right” to judge my disease and symptoms except for my doctor. I understand the importance of proper diagnosis and research for cures but until that happens I don’t like being experimented on for my treatments.

Jeanne

Will Bet Darnell’s Research be done by the time LA wants to apply new regulations? I think they’re jumping the gun again like Oregon did. I think they must wait for proper research.

Maureen M.

Hi Ed, Thank you for this very informative update and for all that you do on our behalf. I somehow feel a bit hopeful, as I lie in bed reading it, in awful pain.
Hope is all we have yet.
I also thank Beth Darnal and others who continue to stand up and push and fight for the rights of our community.
I will look forward to your next update. God bless you and your staff.
Keep strong warriors and never stop speaking out! Maureen M.

Polly Nyberg

I take 2 hydrocodone per day for chronic back pain. I eat well, exercise, apply cold and heat, have massages etc. Hydrocodone is the only relief I receive and this is vital. Please let us have some relief from the constant pain. Polly

James

Well unfortunately the cognitive approach has reared it’s ugly head in pain treatment. Yes it’s where your are in pain and are told don’t worry about it let the thought pass. It’s ok for you to have pain. Your mind controls you and the pain.
During a recent episode the thought of the pain and the pain it’s self didn’t want to pass. Remember your mind controls you, the thought will pass. As things progress pain persists. Yes the pain increases, the spasms start, the ability to even think of or comprehensive thought ability starts to diminish. It becomes what was I going to do when I got up from my chair and walked into the kitchen. After a long while it was get a drink.
By this time my thoughts are only pain. However; I’m told it will pass, I push myself to find the elusive place the therapist said I should go to. I think how long till my meds are due. How long will I have to suffer this time. When I finally realize the meds only help to a point. There is no craving for a particular pill. There is only how long will I suffer.
Yes they are right the pain is my minds response to something going on in my body that may or may not subside soon. The thoughts are direct responses of my body and minds communication to a triggered response. My cells are causing other cells in my body to trigger a response across the neural highway right now there is a traffic jam. A physical alilement is the cause of this pain, not a desire for drug driven oblivion.
I, me, we are not looking for a cheap high. We are looking for quality of life where pain we know will still exist in our lives, but we will coexist with it. There only so many nerves they can burn.
We the people in pain do ordain the right to receive treatment by necessary means to achieve a quality of life that is obtainable thru medical treatment and the use of what ever means that is known by mankind to get our pain to a manageable level and avoid agony at all cost. The law provides for this not hinders it

Bree

You can’t fill put the paper work for the dea . it would npt go throw. They dont care about us . or are voice so don’t bother filling it out because it doesn’t work we have no voice so I will live with this pain that my Dr is putting me through or tapering my medications down and next month I’ll probably be released and then I don’t know what I’m going to do with my anxiety medication because there is no psychiatrist where I live to help me deal with my anxiety so if you’re thinking about moving to Florida don’t it is a state that’s been ruined by governor Scott and our lovely president Donald Trump

Barbara

I really don’t know if there’s hope for any of us. These people and the government will do what they want to do regardless of who they hurt. Who are these people who want to taper off their meds? And why? Do their meds not help them anymore? Have they found some magical replacement? We’ve all had to jump through the hoops. Medications, Procedures, Surgeries, Injections,Stimulators,Implanted Morphine Pumps and endless physical therapy. Years of frustration, depression, anxiety, fatigue.Then finally the one thing that helps is taken away. Why? Because some people overdose and kill themselves just because they wanted to get “high”? Addicts will ALWAYS find a way to get their high. And sadly some of them will die. But chronic pain patients will die too. Because the best help we have will be taken away from us. I can barely handle my pain with the meds. I know without them I will be done. I am so very tired of all of this. I can’t fight this anymore. Good luck to all of you. God Bless

Susan L

Why are people being forced to taper or withdraw altogether when Suboxone is AT LEAST effective at managing the effects of withdrawal? I haven’t heard ANYTHING about lessened prescribing restrictions or that doctors are encouraging it’s use by their patients. It’s GOTTA beat “toughing it out”.

I’ve used Suboxone very successfully for years; it has once-a-day dosing, little (if any) potential for abuse, and it is easy to titrate when it’s time to discontinue. (I’m not excited about that, though that’s what I call “a future problem”. I’ve heard that some people get pain relief (it’s only a partial opioid agonist) from Suboxone, though I haven’t noticed that particularly (it’s actually my husband with chronic pain; I’m the caregiver).

I’m just surprised that at this time in American history, with what must be record numbers of people coming off opiates, that we haven’t heard more about the ONE pharmaceutical option that actually WORKS.

This is disgusting since when did being in pain make you a criminal ?

Alex

Great post Ed! This movement needs to be national, not regional. We meed to enlist physicians in this program because their plight is almost equal to ours. Imagine taking the oath to “do no harm” and then being forced by some very real strongarm tactics to do what you swore not to do. How, as a Doctor, do deliberately cause a patient to have more pain, decreased mobility and a lesser quality of life due soley to keep their license to practice. These federal/state programs are wrong on all fronts.
All this to stop illegal drug use? How about starting with illegal drugs!

Alice LaPlume

How do you share when nobody listens and every thing or Doctors are running scared. I wrote to a man who was running for state Rep. ask him to look at this Pain Network gave him all the information then called left a message and nothing is or was done also no calls. If one doctor puts you on a opiods and forgets to give you an appointment to check you make one and it is canceled so you need to go off this again for the 5th time what is your suggestion? Do you continue trusting people. I told them I was going to run out of my meds but they said he’s gone. What do we do?

Please commentt on the FDA docket by the end of the month! Now they’re looking for people’s experiences with different pain meds – nearly all of them!

If we don’t comment, and tailor the comments to what they’re asking about, then we don’t have that record as our first line of defense!