Looking Forward to Talking About Pain on Thursday

Looking Forward to Talking About Pain on Thursday

Personally, I’m very much looking forward to a discussion with the pain community this Thursday.

The U.S. Pain Foundation has asked me, as editor of the National Pain Report, to participate in a webinar on Thursday at 1 p.m. EDT.

If you’d like to register and listen and, perhaps, participate in the discussion, click here. It will be in “Question and Answer” Format. The subject is “talking publicly about pain” and obviously, there’s plenty to discuss.

We plan to discuss our efforts here at the National Pain Report to educate and inform and, of course, will discuss contemporary issues facing chronic pain patients, families and providers including the opioid controversy, the importance of advocacy, how social media can help you connect and how to submit articles/commentaries and others to name a few optics.

We would guess some of our recent articles might be interesting, including the piece critical of NBC News that prompted this commentary and dozens of responses from chronic pain patients and friends.

But this conversation is about the chronic pain community. What do you want to know? I’ve been receiving emails and texts from folks suggesting topics and I’ve asked a few of our columnists to give me some topic areas as well.

It should be great.

We look forward to the discussion.

September is Pain Awareness Month—and we are honored to be kicking it off.

I read a tweet from Dr. Sean Mackey of Stanford University that caught my attention and could be a promotion for what I hope we can discuss on Thursday:

“People with pain are too often stigmatized in the health care system and in society, which can lead to delayed diagnosis or misdiagnosis, bias in treatment, and decreased effectiveness of care.”

Let’s talk about how we can advocate so that things can improve.

Talk to you Thursday.

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Authored by: Ed Coghlan

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Michelle

After bouts with many neurologists I was diagnosed of MULTIPLE SCLEROSIS, I was placed on medications which helped but my health was fast declining. Finally, I was introduced to Herbal HealthPoint and their effective Multiple Sclerosis protocol. This protocol relieved symptoms significantly, even better than the medications I was given. Visit ww w. healthherbalpoint. c om. First month on treatment, my tremors mysterious stopped, had improvement walking. After I completed the treatment, all symptoms were gone. I live a more productive life

Janice

Due to the preexisting conditions I have that cause me to not be able to obtain health insurance when and if I do go to a dr. I pay cash when I have an mri , X-ray etc I pay cash . Blood test, I pay cash When I’m RX ‘d medication I pay cash. But most of the time I suffer. The drudgery of being in pain 24/7 , all the mf paperwork I am aghast . I’ve been told apply for disability I’ve been denied. Yet I can’t work can’t do squat. The stress of it all brings on shingles. There’s another six weeks of life gone. And yet the hoaky stupid replacements for pain that are being presented to pain patients . Does anyone have a guesstamite on what Americans in pain are spending on what they are purchasing in dire hopes something will bring pain control…further more is there any stats on what the insurance people are saving by denying payment on legit pain control vs what they spend on hoaky prescribed unrealistic or non helpful methods?
At this point where does any situation get off refusing cash . It’s as good as money. It’s a tracking thing huh.

Kimberly

Death can also come from not treating severe, intractable pain with no cure.

My Central Pain Syndrome started 12 years ago, when in a rental home that had a slow carbon monoxide leak for 4 years. I would lose consciousness from a seated position, with body stiffening, flipping over onto my head, hard on hard floor/objects.. over 70 times in 4 years. From brain/CNS/spine injury, the CPS shot out all throughout my body, leaving me feeling like literally being tortured nonstop.
Fortunately a reasonable dose of prescription fentanyl just seemed to suck up much of my pain & allow me to function & even work. I was on the same amount for 10+ years.

My pain doctor retired at the end of 2018 & sent his patients to another practice. Tho’ the doctor just cut me off from long-term fentanyl, with no weaning down & had me take LDN (Low Dose Naltrexone), which is being used off-label by doctors to “try to get the body to produce more of its own endorphins”.

I was excited to try a different treatment, as I’d spent all I had trying to find a way to not have to take pain meds (& be wrongfully treated like an addict). I tried everything under the sun to improve. But I would only get worse or even further injured.

The new dr didn’t tell me anything about LDN. Tho’ I only started with 1.5 mg (instead of 4.5 mg prescribed). As soon as I swallowed it, it felt like a bomb had gone off in my entire body. My body started flapping about & even flung backwards, hitting the back of my head first on hard tile. I ended up in the ER for 10 hours with several people trying to control my body (tho I have no memory of being in the ER). I awoke in the ICU with Acute Encephalopathy, & further brain & CNS injury.
The dr never returned my calls. I even passed out getting a concussion when out of the hospital.
With no pain trtmt, the stress of the torturous pain causes high pulse risking Long QT Syndrome, which is deadly.

Cynthia

Ed, please read Peggy Hillmans statement to them…she tells it like it is..,,anything less is disingenuous and weak. Opioids must be restored to those who’ve lost them and protected for those who still have them. And the DEA needs to stop harassing doctors, pharmacies, insurers. . Until that happens, I don’t think ANYONE will do ANYTHING to stop this madness. You and all of us working on this injustice are going t9 have to address DOJ/DEA directly, at some point. They have all the power,

Just read the New York Post it stated inmates are suing New York State correctional facility for taking away pain medication. Somehow they got a lawyer but regular people can’t get one. But I say hooray this is a great start to bring attention to the mistreatment of people in chronic pain.

davidkenberg kenberg

I’m sorry but I’m done fighting after 18 years of hell.I hope they can explain to my child why her mom will die!! We have no more rights.I can’t do this anymore!!!!!

Angie H

Need to find out what is going on with the high price of opioid medications? Just in the past 2 mths the prices have tripled and insurances do not cover it. This is getting out of hand for people these medications help.

Laurie

And people still believe the American myth; how that is is beyond me!
I suspect that, since the right couldn’t get rid of the ACA that expended Medicaid, they are doing the same thing they did with women’s abortion rights: chipping away at them in stealth mode.
I mean, look at who they are targeting: pain patients, useless mouths to them. We probably mostly vote democratic if we can get to the polls even.
Same thing they did in Germany in the 30’s; first get rid of the disabled.
If anyone thinks there’s an ounce of compassion for any but the rich, you’re delusional.

I just got a call from my provider’s office about my Clonazapam prescription because, the nurse siad “some people overtake this stuff!” I told her they couldn’t cut me off if they didn’t want me to die, Let’s see what happens!
Now, I’m supposed to go to an appt for a refill when I can barely get out of the house to water my gardens in this drought. Lost a bunch of trees and other things from this extended drought.
THAT’S heartbreaking enough!
Now, I’m basically medically homeless after being abandoned, one way or another by all my good long-term docs, the people who KNEW I’m no addict.
Can’t even get some help from my HMOs care coordinator because the questions were for other things than what is happening to me.

So, here I sit, in pain, hopeless and watching Netflix all day on my computer.
I’m either in bed or in my chair.
While crooks make money by the handfuls off this fake “crisis”.

YAY, America where at least I know I’m free!

Marlene

I live in Ohio and suffer from severe, chronic, neuropathic pain caused by EDS and its comorbidities. I’m under the care of a pain mgmt physician who prescribes me opiates so I can function. I consider myself lucky and sometimes can’t find the courage to read all the articles about forced tapering or flat out cutting patients off from their needed meds. I’m terrified this could happen to me. I’m assuming this is a state regulated decision? How do I find out if this is going to be forced upon me? My constant anxiety over this fear has been slowly raising over the last few years and I’ve even been too afraid to talk to my doctor about it. Could you discuss this, please?

Plus,

Seems like many CPP are resigned to suicide, if necessary.
I don’t understand the complacency.
It’s getting time for other counter measures.
I hope the illicit supply stays in place untill you and I don’t need to consider this source.
The desire to escape severe pain is involuntary. German doctors proved this in the 1930 and 1940s. Anything can happen.
The mean spirited, sadistic and evil minded will be entertained and secured in retirement by our wailing and thrashing about. It’s happened before. I allready see those traits in many persons with only minor authority over us.

Dark stuff. Where does it come from? I (we?) were not born like this…

Please pass this along at the affair. Food for thought.
Mr. Coghlan, Thank you for the National Pain Report. Top shelf reporting!

Congratulaitons, Ed. I’m looking forward to your event and to the responses you
receive therefrom. Helen Borel,RN,PhD

Janna Crickmore

So glad you’re going to be our advocate. As I was told today by a doctor, “i’m sure we can relieve your advanced and advancing arthritis with stretches and better posture” Yeah. Since double hip replacement, double spinal fusion, two knee surgeries and rotator cuff repair with bone spur removal hasn’t done it. Sometimes I wonder how they can even say it with a straight face. All of the retirement plans we’ve worked for are down the toilet as we have to stay in the same state as the “pain doctor”. Heaven forbid you should have a daughter having a brain tumor removed on the other side of the country and need to pick up an Rx two weeks early. (True story) I mean can’t you just plan better? Their solution was to have a neighbor pick it up for me and mail it. Is that really a safer suggestion? Perhaps asked the esteemed Stanford gurus “maybe if you’re going to make it so hard to get these drugs, at least you could have some kind of reciprocity amongst states, even if it means staying with the same pharmacy chain or something”. Today I feel hopeless. That I will be trapped by a geographic and calendar leash to the “pain doctor”. And I only take 2 1/2 norco a day. Really? Has it really come to this? No travel longer than 29 days? No helping family or friends in crisis for longer than 29 days? You have 29 days to have a life. Then hurry back so we can charge you an exorbitant office visit to make sure you’re not an addict. Sorry. Pretty frustrated today, as I am after every visit. I often think my incredibly healthy husband would be better off without me. He’s as stuck as I am. How unfair is this to him? So it’s not just patients but families also. I really hate my life and I really hate the DEA and CDC for their arbitrary and inaccurate targeting of chronic pain patients. Tell them to stop the street drugs and pill mills and drug pushers. Leave our family docs and us alone.

Thomas Kidd

Thank you very much Ed.

Look up how the government oppressed / propaganda in the 1930s about the alcohol prohibition and then people started using marijuana and then they come up with oppressing that and they did so by being racist. Government wants to oppress opiates and through propaganda we are all now suffering. And that leads people to street drugs to ease their suffering. The government wants medical marijuana so they can have tax money. But the cost of that medicine is extremely expensive and few will be able to purchase it. I’ve heard Senators say on TV at least with marijuana they cannot overdose. That’s their agenda that they’re pushing. And we all know the truth. A lot of people die from Bad alcohol in the 1930s and even went blind so how many people are going to have to die over the non opiate agenda.

Thank you so much for doing all that you’re doing. You’re excellent speaker and have concise thoughts on the opiate situation for intractable pain people. I do have one thought that I think needs brought up a hundred and forty years opiates has been given as medication and it has been dropped in the past and then brought back again and the reduction prescription opiates have show that illegal drugs are causing overdose deaths. And there needs to be a separation on illegal overdose deaths, suicides from no pain treatment/ reduction in pain medication. Also, mistakes that pharmacists make controlled substance database causing people to lose their medication to no fault of their own . Thank you so much for taking a huge Challenge on and being so willing to do so. May God bless you.

ElizabethR

A huge improvement would be the ability of the medical system to differentiate between (1) pain patients taking prescribed medication responsibly to treat diagnosed medical issues, and (2) recreational drug users. The former are most often older people with one or more debilitating, painful conditions; the latter are most often people in their teens and 20s who may use a variety of substances for the sole purpose of getting high. They are very different populations, but are often lumped together and considered as one.

Pain patients today are almost always on a prescription monitoring program and are closely supervised. Our medication is doled out in exact quantities, usually lasting 28-30 days. We guard it carefully; we do not sell it or allow it to be diverted. We need it to retain some degree of functionality and quality of life. For those who use illicit drugs, there are few restrictions and a plentiful supply. In my city heroin (unfortunately, often laced with fentanyl) is easily obtained at a reasonable price by those in the market for it.

I would be so grateful not to live in fear of being cut off or involuntarily tapered. I would be so grateful not to be stigmatized as a “drug addict” and compelled to sign a punitive “pain contract”, submit to urine testing and be treated with disdain like a potential criminal by some health “care” providers. I’m almost 83 years old, and I would be so grateful to have my pain controlled (not eliminated, but reduced) so that I can continue to live independently and perhaps even find a nominal amount of joy in whatever time I have left. That shouldn’t be be a reach too far.

Linda Olds

Some people say that the pendulum is swinging back away from forcibly decreasing opiates and taking them away from pain patients.
The CDC is saying that they never intended all that to happen. But it will be difficult to turn it around, especially with so many states suing drug companies that produce and market opiates.
We need many loud voices to tell the truth about this!

Michele McDevitt

Just want to warn other chronic pain patients. Don’t even ask your doctor about revising your prescriptions, no matter what. I asked and my doctor at Kaiser put that I am a “pill seeker” in my chart! I know I am not, so time will hopefully take care of this. But I had a bad flare of my lower back issues so I called for advise. Another doctor took my call and apparently told my primary physician that I wanted more opiods. She responded with an email to me that started off with “I’m not prescribing you anymore pills”. An email with her ensued. I haven’t had an increase in pain meds for nearly 5 years, despite having severe stenosis, 2 herniated discs, scoliosis, degenerative disc disease, a pinched nerve and osteo arthritis. I have re-enrolled in Kaiser’s pain management program, which I’ve just had to suffer for weeks until it begins. I’ve paid oit of pocket for hydrotherapy and theraputic massages. Since the flare started at the end of July, I’ve lost all quality of life. Can barely walk, am gaining weight, and extremely irritable due to the pain. Don’t ask.

Judy Dunn

Thank you Mr. Coghlan for all that you have done for the Chronic Pain Patients.
I have been on opioids since 1998, when they were actually prescribed by my
Rheumatologist, when the Pain Clinics first became active in my area. At that
Time they were nothing but gyms with so called a Doctors giving out pills.

Our Doctors have failed us, our Government has blamed us for something we didn’t do and if you try to talk to these people it falls on deaf ears.

My pain management Doctor told me to tell my primary care Doctor that there
was no reason why he couldn’t write my pain scripts since there was nothing
He could do for me except give me a prescription. My primary care Doctors
answer was to get me another Pain Management Doctor.

I have several, and I do mean several, bone, muscle, nerve and lung diseases
Which have gotten a lot worse over the years, none are curable. I argued with
My new primary care Doctor about the dosage of (2) pain pills a day. I informed
Her that we are not clothing, one size does not fit all. That is why they make
Different dosages.

My other complaint, we are being treated like addicts even though we are dependent on our pain meds just as diabetics, heart patients and other chronic
Disease patients who take monthly pills. Yet the real addicts are being treated
Like victims even though they are the ones who chose to continue taking
Something they knew they shouldn’t.

Tracy Cabanting

So proud of you and excited for you, Ed!
I’d like to k ow in what “effective” ways can we start changing the attitude towards us, and Opioids, as well as actions to take.
Talk soon! Best wishes and a big hug!!!

James McCay

You’re the perfect person for the job Ed! I’m proud to have you on my side. I’d want no one else representing us at the U.S. Pain Foundation. I wish you all the best & I know you’ll get OUR points across the right way for once.

Thank you so much Ed for taking on such a big job and sticking with it! Personally I would love to see a difference be known in the opioids that kill and those that save. All over the news people are rejoicing over the last major corporation that was sued. Why isn’t the news talking about illegal fentanyl and heroin coming in from the borders of China and Mexico? Larger numbers are coming out for the past year’s opioid-related deaths than those from three years ago. Now how can this be when millions of chronic pain patients have been suffering needlessly due to the drastic cut back that started three years ago and has only gotten much worse? Somehow, someone needs to make it known that when “illegal” Fentanyl and heroin are taken with of course “no prescription” it will likely lead to something deadly. Our general public needs to be made aware that chronic pain patients survive and thrive when taking “legal” opioid medications as directed by their physician’s. Our public needs to be made aware that there is a major difference! They need to be made aware of what the Opioid Injustice has done to the millions and millions of chronic pain patients! Deaths are occurring on our side as well due to our nation’s ignorance! It’s more than apparent that no one is seeing our side with the exception of ourselves and of course our very frightened physicians who are pulling out left and right or are standing by only being allowed to watch their patients wither away.

Randy

Talk talk talk, I think the only people who will listen are the victims. Yes there are victims on both sides of the opoid issue. The only problem is that if your not on the oppression side. You have no voice in the narrative. I feel less sorry for the addict who can’t say no to taking illeagle drugs like heroin, fentanyl, along with opoid pain medication and alcohol. Than I do for the chronic pain patient victimised by the system that issaued rules and they followed to the T. Just to get the relief they got from opoids. Especially seniors who suffer the most.