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What happens when lives are dramatically torn apart by chronic pain? The Painful Truth takes us behind the headlines of addiction and beyond the controversies of the war on opioids – and provides an intimate view of patients’ frustrations, setbacks, and goals as they deal with chronic pain. We hear patients tell us their stories … and we understand the social barriers and prejudices they face.
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Do you think the chronic pain community could get Michael Moore-the film maker to take his camera around the country and get our story out?
I am a retired federal social security examiner and a part of the story not being told is the millions of people who will now apply for social security disability due to severe pain that was controlled prior to these “new” rules.
Here is Michael Moore’s website
This person may have a point.. Michael Moore is most definitely ANTI-TRUMP and ANTI-REPUBLICAN and PRO-LITTLE GUY.. He has a “bully pulpit” and a “bull-horn”.
This battle for the chronic pain community has to be a personal battle.. since those in the chronic pain community are the ones that are suffering and being discriminated against.
I think that Michael Moore would have to be approached in a manner that he could “back hand” the Trump administration and/or Republican party in general…
The fact that CMS ,VA and others are adopting the CDC guidelines…. that were developed behind “closed doors” and leaks have indicated that this committee had some very well known anti-opiate advocates on it. One that has financial ties to a group of rehab facilities.
For starters …AG Session has asked Congress to not renew the law that prohibits the DEA from going after entities within states that has made Marijuana legal https://thejointblog.com/ag-jeff-sessions-asks-congress-remove-federal-medical-marijuana-protections/ We have some THIRTY STATES that have legalized MJ and MMJ in some form. Session appears want to ramp up the war on marijuana even though there is increasing evidence that it has certain medical benefits.
The Justice Dept should be enforcing discrimination under the Americans with Disability Act and Civil Rights Act against the chronic pain community and those who have been diagnosed with other subjective disease and have a legit medical need for controlled medications.
Chris Christie just had the first meeting yesterday of some committee on drug abuse http://www.washingtonexaminer.com/christie-to-lead-new-opioid-commission-under-trump-administration/article/2618751 It is common knowledge that Christie had a close friend from college OD… that contributed to him becoming a drug abuse crusader. We don’t know where this committee is going, but my money is on… that it will be in the direction of further restriction of access to opiates and other controlled medications that pts have a legit medical necessity.
Also all the state legislators that have passed opiate dosing guidelines … few – if any – legislators have a medical background and they are making medical decisions using a “cookie cutter” process and limiting pain management via edict
I did this post this other day about Cutting of pain management therapy.. turning a “maker” into a “taker”
a chronic pain pt that had moved from California to state of Washington and was being managed on 18 mg morphine equivalents and the WA doctor refused/declined to continue the therapy that was working… at such a low dose… and the person was in fear of losing his job..
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Our Missionhttp://www.aarp.org/about-aarp/
AARP is a nonprofit, nonpartisan, social welfare organization with a membership of nearly 38 million that helps people turn their goals and dreams into real possibilities, strengthens communities and fights for the issues that matter most to families — such as health care, employment and income security, and protection from financial abuse.
It has been claimed that the “biggest enemy” of a chronic pain pt is their family and the local pharmacist. Because neither really knows what is going on with a particular pt’s overall health. All they know is the “large quantity” of medications that they take including those “bad opiates”.
Go to their website and search for “alcoholic” and you get 98 articles.. search for “opiate addiction” and you get 157 articles… search for “Nicotine addiction” and you get 57 articles.. The addiction (Nicotine) that kills the most people gets the least amount of “ink”… Alcoholism kills more than addiction and yet opiate addiction gets the MOST INK.
Type in “chronic pain” and you get 3030 articles and in reading the dozen or so articles.. it is all about “alternative therapies” including a article from the infamous DR.OZ.
It would appear that their MISSION STATEMENT of “fighting for what matters most to families “… HEALTH being one… that apparently they are aligning themselves with all those in the Federal/State bureaucracies that believes that prescribing opiates causes addiction.
In 2016 AARP spent $8,710,000 on lobbying http://www.opensecrets.org/lobby/clientsum.php?id=D000023726&year=2016 If one looks at the articles that they have published… one can come to the conclusion that little/none of that nearly NINE MILLION DOLLARS was spent on the issue of better chronic pain treatment for the 38 million seniors that they claim that they represent.
The question has to be asked… so all those 50+ y/o “seniors ” who suffer from chronic pain… support an organization that appears to be SILENT on one of their most pressing personal health issues ?
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Long-term care providers are falling behind when it comes to training for infection control personnel, leaving gaps that may be to blame for at least some of the 380,000 annual resident deaths linked to healthcare-associated infections, new research shows.
Investigators with health departments in Tennessee and Washington set out to gauge nursing home providers’ infection prevention proficiency, a topic that has heated up following the release of the Centers for Medicare & Medicaid Services’ final rule for long-term care. That rule, published in September, includes provisions requiring providers to improve their infection prevention and control programs.
The results, presented Wednesday at the Association for Professionals in Infection Control and Epidemiology’s annual conference in Portland, OR, found that many of the infection control officers in the facilities surveyed lacked formal training and the foundational skills required for infection prevention.
“The findings presented here are concerning and should prompt immediate efforts to increase education and support for infection prevention programs in all types LTCFs,” said APIC 2017 President Linda Greene, RN, MPS, CIC, FAPIC. “Nursing home residents often have multiple, chronic diseases, transfer frequently between the hospital and the long-term care setting, and are overexposed to antibiotics, all of which place them at higher risk for developing infections with antibiotic-resistant organisms.”
In Tennessee, 95% of facilities studied failed to meet the requirements or an antibiotic stewardship program, while 56% of providers had infection control programs managed by someone with no additional training. Many facilities also may have implemented competency-based training programs for hand hygiene and personal protective equipment, but failed to provide feedback on employees’ performance.
On average, long-term care facilities in Tennessee devoted only 12.5 staff hours per week to infection prevention efforts, researchers said.
In Washington, the researchers found that only 10% of infection preventionists had formal training. Many providers also failed to conduct annual reviews of their infection prevention policies or give ongoing feedback on employees’ competencies. On average, infection professionals in that state dedicated just 11 hours per week on prevention activities.
Researchers said the results of the surveys in both states showed “clear gaps” in infection prevention practices, as well as an “urgent need” to boost efforts within long-term care facilities.
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After a couple of weeks of doing the pharmacy crawl, we finally found a pharmacy to fill my fiance’s prescriptions. This happened about 4 years ago but this pharmacist said…….yes, he would fill XXX’s prescriptions BUT….he was cutting his methadone by a third. AND he was changing his Oxycodone 60 mg to morphine 30 mg IR. Plus cutting those from 240 to 120. He said he doesn’t sell Oxycodone at his pharmacy, and also…..exact words….if we didn’t like it we could go somewhere else. Where? We’d been searching for 2 weeks for the 5th time! I also know for a fact that he DOES sell Oxycodone, BUT he only sells them to cash paying customers. That way he can increase the price ALOT, because he can’t with Medicare customers. Just insuring drug dealers have plenty and screw the actual suffering patient!
This email and “sad story” shows not only DENIAL OF CARE but is busting/violating so many rules/regulations and/or contractual obligation.
This independent pharmacy is in FLORIDA and I can’t be positive but I believe that I have heard of this pharmacy/Pharmacist before and some/many of the shenanigans that he pulls on chronic pain pts… but …. since I am not sure.. I will not repeat what I have heard/been told previously.
This is another example of a good reason to do a recording audio/video of all interactions with healthcare providers.. This is another example of why pts should make a copy of their written prescription that they are given and compare it to the particulars of the prescription that you are given… both in medication, strength, quantity and directions.
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The “other victims” of the opioid epidemic are pain patients who need the drugs but cannot now get them because of fears related to their use
“The opioid epidemic is a national crisis that should not be underestimated.” That’s a quote from a June 1st New England Journal of Medicine perspective piece by Susan Glod. She’s a physician involved with hospice and palliative care and pain management. But the title of the piece reveals another issue related to the current situation. That title is The Other Victims of the Opioid Epidemic. Those other victims being people in desperate need of pain treatment who cannot now get it because of fears related to the prescribing and use of opioids.
To try to help to avoid abuse, new forms of opioids have been created, called abuse-deterrent opioid medications. These can’t be crushed or dissolved, thus making them difficult to snort or inject. But “these formulations would have no impact on other opioid-related deaths such as unintentional overdose.”
Glod in an audio interview related to her New England Journal piece.
“I think that the downside to all of these formulations is that they have the potential to make needed medication more expensive and less accessible to patients who are having opioid responsive pain and who really do require these medications. What really worries me the most about all of this is that if the medical community, the public and policy makers get too distracted by the promise of a solution to the opioid epidemic in the guise of a reformulation of known opioids, I’m worried that we’re going to lose focus on addressing all of the underlying systemic issues that have really led to the epidemic in the first place—such as lack of access to alternative evidence-based means of controlling pain, the lack of mental health and social services to address other components of suffering besides physical pain, and the lack of providers who are trained in managing drug addiction and dependence.”
Glod’s full article and audio interview are available at the website of the New England Journal of Medicine.
—Steve Mirsky
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New DEA, AR National Guard Illegal Marijuana Growth Tipline
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CRPS, chronic pain and suicidewww.blbchronicpain.co.uk/news/crps-chronic-pain-suicide/
This is not an easy topic to write about, but its a really important one. Please be aware that this article contains discussion of suicide and self harm.
Ill start bluntly: CRPS is colloquially known as the suicide disease. To most sufferers, that probably doesnt come as much of a shock; CRPS is the worst pain condition known to man, according to the McGill Pain Index. Its more painful than childbirth, than amputation of a finger; CRPS is as bad as it gets. If youre new to the condition, that Index might help you understand that your suffering really is as bad as you think it is. No, youre not making it up, no, youre not exaggerating, and yes, you really do need and deserve all the help you can get.
CRPS normally begins after an injury, but occasionally it simply comes out of thin air. Whichever scenario applies, it is an arrival that derails your normal physical functioning; where there should be reducing or zero pain, the agony simply spirals further and further out of control. My own CRPS developed after a nasty but fairly simple injury that should have been largely healed after a few weeks in plaster.
CRPS affects your mind, too
There is no way that this terrible life-changing pain can occur without it affecting your mental state. Just none, and many CRPS patients will become clinically depressed. It used to be believed that, because so many sufferers were depressed, CRPS was more common in those already suffering from or pre-disposed to depression; that was until someone actually thought about the situation and realised that if you have hideous, life-destroying pain, well, then youre probably very likely to be deeply unhappy, arent you? Its now understood that of course most CRPS patients develop depression, simply because CRPS is such an awful condition to have.
And unfortunately, the sad reality of living with terrible pain that derails your life utterly is that some people cant live with it. I cant find any reliable statistics about how many people with CRPS commit suicide. Theres references everywhere, as if suicide and CRPS is some open secret that everyone knows about but no-one really investigates: that suicide is 900 times more common in sufferers, that 70% have attempted suicide, but nothing verifiable. What I will say is this: I think pretty much everyone I know with CRPS knows at least one person with the condition whos tried to hurt themselves. I think pretty much everyone I know with CRPS has thought about it at some stage. I know I have.
Ill take an important pause here: in this piece Ive written about what to do if youre feeling suicidal or having thoughts about harming yourself. If you feel that way, please go there now. Please. Youre not alone and you dont have to feel this way.
The death of Bryan Spece
Im writing this article now because I read about the very sad death of Bryan Spece on Pain News Network. Bryan was a chronic pain patient, being treated with opioid medication for ongoing back and carpal tunnel pain. He was under the care of Rodney Lutes, a physicians assistant, working from the Benefis Pain Management Centre in Montana in the US. Rodney had prescribed Bryan a regimen of 100 milligrams of oxycodone daily and, according to Lutes, he was doing very well on this prescription. Hed been on this medication for around three years. Friends, family, and Lutes state that thered never been any sign of depression during this period.
In March of this year, however, the picture changed. Benefis discharged Rodney Lutes for undisclosed reasons and his patients were transferred to other doctors within the clinic. For Bryan this was a death sentence.
Bryans oxycodone was drastically reduced by his new doctor. He was not doing well on this new prescription, according to a relative. He was having money issues with not being able to work as often because of the pain and with having his pain pills cut back. He was just very stressed, constantly, about it.
Tragically, Bryan was found dead at home from a gunshot wound on May 3rd. The police found several text messages on his phone. He was talking to his friends there in Lewistown, stating Come get my guns. Im in so much pain, I might do something stupid. Bryans loved ones have no doubt that this is what eventually happened.
After Lutes departure from Benefis, form letters were sent to all his patients stating that their new doctors would probably change their prescriptions and advising them to be aware that arguing or complaining about changes in your prescriptions will not alter your clinicians care plan. Another letter says verbal or written complaints to staff will not result in a change to your prescription. In other words, you have no choice, no voice, and no chance.
Tapering opioid medication
The Center for Disease Control discusses tapering of opioid medication with the headline Go Slow, advising a maximum taper of 10% of dose per week and no more than 10% per month for those whove been on opioids for a while, like Bryan. It advises careful monitoring of a patients mental state during a taper of medication, and emphasises the importance of offering psychological support.
Bryan Speces dose of oxycodone was reduced from 100 milligrams daily to just 30 milligrams. Thats a reduction of 70%. I cannot find ANY literature anywhere that condones or even suggests that such a drastic taper is appropriate. Its hard to view Bryans treatment by his new doctor as anything other than cruel and unusual. His family blame the Benefis clinic 100% for Bryans death.
The American war on painkillers
I have written before about Americas war on opioids and the ever more stringent guidelines that are being presented by various government bodies and politicians, seemingly in some competition to be seen as the hardest on drugs. I also wrote about my fear that wed count the impact of this policy in dead pain sufferers. The terrible, life-ending problem with this initiative is that it abandons the genuine chronic pain patient, the person, exactly like me, who is absolutely reliant on strong painkillers to live their life. These people are patients, not addicts; how dare anyone who signs the Hippocratic oath treat them with such callous and cruel indifference? Complaining about your new prescriptions wont change anything. Arguing will have no effect either. How far do we have to go to be heard? Will you listen to me if I put a gun to my head?
As I said previously, there is no doubt that chronic pain goes hand in hand with depression. Life-altering pain that takes everything you love from you will undoubtedly render the most optimistic person unhappy. During the early years of my CRPS, there were times when I was significantly depressed and I seriously wondered whether I could continue to live this way.
Coping strategies for chronic pain
The reality, though, is that by gaining the right support for me, those feelings passed. I love my life now, despite the CRPS, despite the constant pain that invades every single thought, every single second I have. A significant part of that support was psychological, enabling me to think differently about my new situation. Some of it was surgical, with my spinal cord stimulator making a big difference to my pain levels and functioning. Another important element was pain management techniques, including the month I spent learning mindfulness at St Thomas Hospital in London.
A big, important, undeniable, essential part, however, is my daily opioid pain medication. Without it, I could not cope. Without it, I dont know if Id be here today. Thats not over-dramatising, its simply the truth. If my pills were taken away tomorrow, like Bryans were, I dont know if I would be able to see a way forward through my haze of pain either.
It makes me mad as hell to know that we failed Bryan so badly that he couldnt see a way to continue living. And it is our failure; we, as a society, have allowed these guidelines to be put in place and weve allowed genuine patients to be treated this way. Imagine the outcry if we allowed chemotherapy to be stopped for cancer patients. So how can we be allowing this to happen?
#PatientsnotAddicts
It may feel like were powerless, but actually were not, not completely. If youre in the USA, then you can get involved with a group like Patients Not Addicts and theyll tell you how to lobby your politicians to protect these essential drugs for chronic pain patients. In the UK, were not yet experiencing the drive to curb opioid medications like in the US but I fear its coming. Ill continue to monitor the situation and will write about any developments.
I will end with a request: If you believe that pain patients are not addicts, if youre a chronic pain sufferer yourself, if you love someone with chronic pain, if youre simply someone who understands that no medication is necessarily bad as long as its used appropriately, then please speak up. Make your voice heard. It is needed more than ever right now. If we dont, then I fear Bryan will simply be one of the very first casualties of this callous policy. Dont let his death be in vain.
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MADISON, Wis. (AP) — The Wisconsin state Senate has approved a pair of bills designed to help fight drug abuse and addiction.
One bill the Senate passed on a voice vote Wednesday would allow emergency and involuntary commitment for drug addicts. Supporters say that would be a tool to help put someone on the road to recovery.
The other approved would ensure that someone who overdoses would be immune from probation or parole revocation if he or she enters a treatment program. Backers say the change would encourage people to call for help in an emergency. It passed 32-1 with Republican Sen. Steve Nass voting no. He says it goes too far in granting immunity.
Both measures were sponsored by Republican Rep. John Nygren, of Marinette. They now head to Gov. Scott Walker for his consideration.
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