Opinion: Pain Community – Ready to Step Up?

Opinion: Pain Community – Ready to Step Up?

By Ed Coghlan.

September is a big month for chronic pain.

Not only is it Pain Awareness Month, and there are many awareness activities underway, but there is quite a bit of activism around the country this month, and people who are organizing need your support.

Don’t Punish Pain Rallies Scheduled

Tuesday September 18th will see dozens of Don’t Punish Pain Rallies  around the country. The event is the brainchild of Claudia Merandi of Rhode Island who has inspired 79 rallies in 45 states that have already been scheduled. Here’s a list. You can attend one near you or you still have time to organize your own.

Oregon HERC and Forced Taper Take the Next Step?

Two days later, on September 20th, the Oregon Health Authority Health Evidence Commission (HERC) is asking its Chronic Pain Task Force to go over what was heard at the controversial August 9th HERC Meeting. You’ll remember that Oregon is considering a forced taper policy for Medicaid patients who use opioids. It caused an explosion of criticism from the chronic pain community, advocates from around the country, physicians and patients inundated HERC with protests and asked that they reconsider a policy that many experts just don’t think are practical.

Is Missouri Looking to Lead?

In Missouri, Mary Cremer of Jefferson City has been working successfully with State Representative Mike Moon to have the new Governor, Mike Parson, consider overturning an executive order that his predecessor issued which has resulted in doctors being told to write fewer opioid prescriptions. Governor Parson appears open to the conversation.

His predecessor Eric Greitens resigned earlier this year after allegations surfaced of sexual coercion, blackmail, invasion of privacy, and misuse of charity resources to fund his campaign.

Here’s the National Pain Report story:

Cremer is asking people both in Missouri and across the country to contact the Governor and ask him to overturned the executive order. The Governor’s phone number is 573-751-3222. His E-mail: mo.gov/contact-us. Be respectful.

Big Federal Meeting Scheduled

And, the HHS Task Force on Best Practices in Pain Management will meet on September 25th. We will report more on that as the day approaches.

Can You Save an Important Project?

Finally, Tina Petrova has created a feature documentary (Pain Warriors-The Movie) that she says exposes the injustices done to our international Chronic Illness & Chronic Pain community. “Long under-recognized and misunderstood, we face a dire lack of available & accessible treatments, which serve to offer many some small quality of life, helping us to live in dignity,” she said.

Tina needs $6,000 in order to finish and begin to distribute the documentary. Any donation—no matter how small—is welcome. Big donations are ok too. To Contribute, go here.

We may be hearing more from Tina in the next few days as she works hard to save her film.

There’s lot going on. Figure out how you can help.

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Authored by: Ed Coghlan

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John

I’m a chronic pain patient with multiple fractures and injuries – broken cheekbone, shoulder, collarbone, ribs #1-7 on the left side and multiple single ribs on 2 other occasions, compression fracture T4-8, broken radius and ulna, broken right ankle, broken left ankle, torn acl, mcl and miniscus right knee, miniscus left knee, broken bones in foot, and more. I’ve been taking morphine as prescribed for over 20 years with no issues and had a good life until recently.
My dose was 600mg/day and remained steady since 2004. That dose worked.

For the past several months I’ve been forced to taper. I’m now at 300mg day and miserable. I sleep 3 hours a night if I’m lucky, wake up from the pain and often vomit. I’ve totaled my vehicle when I pulled in front of another car thanks to being exhausted from pain and lack of sleep.

I used to be able to work hard and take care of my family. I had a good life. Not so much now. I honestly don’t know know how I’m going to make it later this month when I have to drop my dose again.

I’ve been to 3 pain clinics – the first two saw the dose I was on and without asking anything about my history or source of pain, told me I had to “detox” because 90mg was the state limit.

That’s not true – the state guidelines recommend seeking alternative treatments before increasing a patients dose above 90mg/day – and for patients already above that dose they recommend things like pill counts, urine tests etc – nowhere in the guideline does it state 90mg is a daily maximum – but the doctors are so scared that’s how they treat it.

The third pain clinic recommended a pain pump implanted. Sounds like a great idea but before they would consider it they require no opioids for at least 7 days. The doctor told me I should reduce by 100mg a week for 6 weeks. My blood pressure is dramatically higher tapering 30-60mg month – I have no doubt 100mg less a week would kill me. Shouldn’t they know this?

I’m now taking 2/3 of my daily dose in the morning so I can at least work though it’s difficult, and at night I’m miserable. It’s going to get worse as my dose is reduced again.

Ive already tried nsaids and still suffer stomach issues from that, acupuncture, epidural injections, trigger point, tens, biofeedback, and more. I obtained some relief from cortisone injections but only where it was injected and there are too many injury sites to do that regularly.

Morphine works but it’s being taken away.

So what do I do?

Tracey

Do you think the NC pain rally will still be held on Tues 9/18? 

I’m planning to come, but I’m not on Facebook to see if plans change after the hurricane. 

I’m concerned that our efforts at press and legislative attention may be thwarted, too, so soon after what looks like it’ll be a natural disaster and big impact in our state. 

I’ve tried a few times to reach out to the organizers in my state on the list, but haven’t heard back yet.

How can I stay in the loop on any updates? 

Hayden

It simply doesn’t make ANY sense that a substance that causes far more death yearly, alcohol, than opiate MEDICATION death is not under fire. Alcohol use results in far more death, yearly than the reported opiate abuse which is not truly differentiated between prescribed only medication overdose and many different substances, including distilled alcohol, legal alcohol, and some sort of opiate used resulting in overdose. It is because people raised so much H$$L when prohibition was enforced ,and more death was caused by people making deadly alcohol from substances that were in fact deadly when ingested that prohibition was repealed. With pain medication, prohibition ,the SAME effectively, as alcohol prohibition happening with the forced tapering of a MEDICAL drug that has proven to be effective for the use of pain management both acute and “chronic”, illicit DEADLY substances now flood the street, marketed as “medical” drugs on the street and they are even labeled, literally on the pill as known opiate medications yet they are fake drugs being smuggled into the country yet the DEA is far more interested in wreaking havoc and terror upon documented pain management patients. It makes no sense. Is it because the DEA does not wish to stop illicit KILLER, profitable to whom (DEA) substances labeled as legitimate drugs to enter the country? Is it that prescription drugs which pain management patients legitimately need is easier to to stop from being prescribed than to do the job the DEA was initially commissioned to do? Keep profitable to whom (DEA) drugs from even entering the country. I can not help but to “connect the dots”……sorry for those that believe government agencies are all …..patriotic and 6jVyDtruly give a damn about American ideology! Of course not ALL officials of a government agency are rotten but.

Hayden

I simply don’t believe that ANY federally held “best practice” forum held for pain management hearing will do any effing good at all. First I believe untold numbers of letters, e-mails and phone calls have been sent to our Washington reps, our state medical regulators, the CDC, HHS, DEA, and any agency that PMP’s believe will listen but, it has to be an “officially” held forum for input from patients and our doctors, also the general public concerning the evident un managed pain that is happening and has been happening now for almost two years to be “officially”recognized. It is simply another bureaucratic way for all federal agencies involved (CDC & DEA) in the criminal reduction of effective opiate medication for we the pain management patients and our pleas to be “dis” counted and unrecognized Even though we, the pain management patients HAVE sent thousands of e-mails, letters, and made phone calls to our wash. reps, our elect, all federal agencies such as CDC, DEA, and HHS asking for help, we have been dismissed .and the ONLY way to be heard is an “official” forum while the “official” regulatory agencies concerning opiate medication dosages to documented pain management patients FULLY realize that only a VERY small portion of the total amount of pain management patients so badly affected with CDC’s “decision” to involuntarily reduce pain management patients to an ineffective dosage of the ONLY effing medication known to man to manage lifetime, continuous, severe pain management issues caused by accident, disease and even doctor screw up which I believe is far more prevalent than is truly reported.will actually use the “official” forum to………….be heard. A very effective way to simply disregard ALL pleas to government to be heard, recognized and respond to because all the contacts by we the pain management community that truly need opiate medication in a tailored dosage, prescribed by our doctors and pain management specialists for years and decades with documented beneficial results is not enough evidence that opiate/opioid medication has actually helped people….patients that suffer and can only be helped with opiate/opioid medications. in an effective dosage.
Summary…..an “officially” held forum that will hear only a FRACTION of pain management patients that now suffer with forced reduction of opiate medication will not represent all of us that have been forced to reduce medication used for years and decades for benefit.

Wendy T.

The only thing that stops me from ending my life due to my suffering at my current, constant pain level of 8, is what it would do to my family. At an 8, what they would suffer trumps my suffering. I will continue to suffer to save them emotional pain as long as I can. But this is the most I can take. If I lose any more of my pain relief- I’ve already been forcibly stepped down- I will no longer be able to cope with the pain. It is so hard now! I have done research on the quickest, most successful way to commit suicide. If my pain goes up at a constant level I will kill myself. I have made my family aware of this. I don’t want to die, but I just can’t cope with more pain! I resent that our government has put me in this position!

I have two rare diseases, both of which cause chronic pain. I am bedridden due to having my opioid medications stepped down from a dose that worked, after the prior to this round of federal “guidelines.” Before the step down I was at a daily pain level of around five. At a five I was limited, but was still able to socialize a bit with friends, occasionally do laundry, cook, vacuum, grocery shop, do light cleaning and run errands.

My daily pain, *with* medication, is now a constant 8. It never stops. It is nightmarish!

I also live with the knowledge that a study by Northwestern University has shown that Chronic Pain damages The Brain! That concerns me greatly!

The worst thing I have ever done in the “breaking the law” area is speeding. (I paid my fine without complaint.) Yet the lives of people who illegally obtain and use opioids are counted as being more important than my life! I am sorry for the friends and family of addicts, and even for the addicts themselves, but I HAVE DONE NOTHING WRONG! I have two documented diagnoses and I am under a doctor’s treatment. I have a medical need! Why must those with an actual medical need suffer to keep those engaged in illegal pursuits safe?

Mildred Bradway

People have been Dying FROM SUICIDAL & overdosing for over 100 years on over the counter pain meds. Why all of a sudden is there an attack on OPIADS. Just because of FIRERS IN Afghanistan on the POPPY FIELDS. Why because of Money & Politics.. people are going to die or overdose just simple because they don’t care anymore. Governments don’t belong in the Dr’s offices. !

Brian seefeldt

My doctor has started a mandatory cut back. I fell 3 stories due to an acoustic neuroma brain tumor. Damaged my spine, and since then my life has spiraled down hill. Yes im on oxycodone 45mgs every 4 hours ir. Since the long acting caused me heart issues. But im lucky she has only cut me 5mgs over 6 months. But since then I’ve had 3 cervical spine surgeries. 3 heart attacks due to uncontrolled chronic pain. And now i have an infection in T2. The only thing that gives me any type on normalcy are my oxy. I sleep about 4 hours a night, and stuffer pain that keeps me awake. Yes, i realize people abuse them and will find ways to abuse any drugs that are made to replace them. If i loose my pain pills, all i ask is you put a gun in my hand. Without my meds my life, will turn unbearable really quickly. I dont want to die, all i want is a chance to live as normally as possible. And as pain free as possible.

Steven

Today, 9/10/18. The news is suicides increase to record. 50000 since 2010. the news caster looks dumbfouned why. I am so sick of this cover up. Why do our doctors just stand by and say duh, sorry, nothing I can do. I hear you say you cannot stand the pain and you ask me am I supossed to kill myself. Carry on and dont let them win.

Mavis Johnson

No one in the so called pain community is discussing how this topic, was covered by our media. https://www.cjr.org/covering_the_health_care_fight/what-the-media-gets-wrong-about-opioids.php We have been disrupted, negated and made invisible in a carefully crafted media narrative that misrepresented the facts for a reason. No one here looked at any of this objectively. They were busy holding a Pity Party in order to peddle alternative remedies, which did not work, while building a platform for Pharma, and the device industry.

Something needs to give here people! There are thousands of people that suffer 24/7 with chronic pain. For some, they have either already committed suicide or are contemplating suicide because they can not get adequate pain relief. This is a shame! I understand there are people that abuse pain meds by buying them off the streets. But for the the chronic pain patients that have legitimate illnesses and painful physical issues, we need to be able to live with some dignity and quality of life! Government needs to stick to politics and let the doctors do their jobs, PERIOD!!!