Donate to RSDSA – a single gift can help so many & support better treatments


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I alone cannot change the world, but I can cast a stone across the waters to create many ripples.
– Mother Teresa
Donations are like a stone in the water, a single gift can ripple through the community to help many people. Every donation to us is terrific and we want you to know that each is important and meaningful.
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The holiday season is a special time of the year for being part of a community, sharing, receiving and giving. We ask you to make a gift to our End of the Year appeal to ease the lives of people with CRPS.
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We can’t make the pain go away, but with a donation from you we can work together to give those with CRPS support, education, and hope while driving research to develop better treatments and a cure.
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Consider the impact your donation will make in 2020 on the lives of those with CRPS. We can work together and share the goal of bringing light and hope to people living with CRPS.
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Thank You!

The RSDSA Staff – Pam Kientzler, Jim Broatch, Jennifer Pincus & Tracy Greer

Courageous Kids Camp Open for Applications!

Courageous Kids Camp instills inspiration and empowerment in children!
Registration for the 2020 camp and retreat sessions is now open. Apply today.

Bad Flare Day Shirts Are Now Available!

These “Bad Flare Day” shirts were a hit at the 4th Annual RSDSA Long Island CRPS Awareness Walk & Expo in September!
Head over the RSDSA Shop to purchase your shirt today just in time for the holidays!

Thank you to our title sponsors!
Our title sponsors make RSDSA events and awareness activities possible. Please join us in thanking and supporting them!
The Michael and Elizabeth Axelrod Family Foundation

RSDSA
99 Cherry St. • P.O. Box 502 • Milford, CT 06460
Tel: 203.877.3790 • Toll Free: 877.662.7737

Our Mission
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) mission is to provide support, education, and hope to all affected by the pain and disability of CRPS/RSD, while we drive research to develop better treatments and a cure.

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The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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For My Home Page, click here:  

Welcome to my Weblog on Pain Management!

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PLEASE GIVE TO RSDSA – donor will match donations up to $5,000!


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Neuropathic Pain is

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highly difficult to treat 

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and few medications are available

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Please donate to RSDSA to support research for neuropathic pain & help those disabled by pain.

 

 

From RSDSA:

 

It’s almost go time!

 

We are only days away from #GivingTuesday 2019! This year, we have a donor who will match our donations up to $5,000! It’s true that it takes a village like our community to work together and raise awareness, educate, and advocate for better treatments.

 

If you haven’t done so already, please make a donation to our #GivingTuesday fundraising page and tell your friends and family about our campaign. Spreading the word gets our voices heard and the donations rolling in! We’re excited to be a part of this worldwide event and providing a chance to give back to our community.

 

Please join our campaign between now

 and Tuesday, December 3, 2019

 

RSDSA’s 2019 Accomplishments

 

  • Co-sponsorship of Courageous Kids Camp for children with CRPS in Kentucky for the 4th year

  • Sponsorship of Young Adults Weekends for young adults with CRPS who are transitioning into the workforce, independent living, and other new situations

  • Sponsorship of an accredited free online course on pediatric CRPS

  • Sponsorship of two Treating the Whole Person conferences; in Houston and Denver

  • And much more!

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Cheers,

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Your Team at RSDSA

 

 

 

 

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We are highlighting a different Warrior’s story on our blog each day!

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Catch up on the posts today!

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The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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Comments are welcome.

This site is not for email, not for medical questions, and not for appointments.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please IGNORE THE ADS BELOW. They are not from me.

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Tell the FDA There is an Urgent Need for New Options for Pain – DEADLINE TODAY


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TODAY IS THE DEADLINE


Electronic comments can be submitted here. Again, the deadline is Monday at 11:59 PM EST.

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Your comment doesn’t have to be long to make a difference.

Tell the FDA There is an Urgent Need for New Options for Pain

 

from

Cindy Steinberg, National Director of Policy & Advocacy,

US Pain Foundation

 

 

At the U.S. Pain Foundation, we often send out notifications to the pain community about opportunities to take action on pain-related issues at the federal level. Most people, if they are anything like me before I became an advocate, assume weighing in on these opportunities doesn’t make a difference.

 

I want you to know that it does! Your voice really does matter. Federal agencies have rules for how they must handle responses to public comment periods. They are required to review and consider public comments in their final rulemaking. Typically, comments are read and then categorized according to key topics or concerns within the comments. If 1,000 people write in about a key topic or concern, it gets attention. At the very least, a large response to a comment period lets the agency know that many people are paying attention to what they are doing and will want to see their views reflected in the final product.

 

With that in mind, I want to encourage all people with pain to submit their comments about the urgent need for new medication options for pain relief to the Food and Drug Administration (FDA) by this Monday, Nov. 18, at 11:59 pm EST. Specifically, the FDA would like the public’s views on two main issues:

 

  1. Should sponsors of new opioids be required to demonstrate comparative advantage relative to existing opioids?

  2. What incentives would better support and encourage the development of new treatments for pain?

This comment opportunity comes on the heels of a Sept. 17 public hearing at the FDA, called “Standards for Future Opioid Analgesic Approvals and Incentives for New Therapeutics to Treat Pain and Addiction.” At this hearing, many different views on these questions from various individuals and organizations were presented. For example, some people said that no new opioids should be approved and that existing opioids should be reconsidered for possible removal. Others said that there has been a drought of innovation in pain therapeutics and that FDA should do more to encourage innovation.

 

Sadly, it is true that there has long been a dearth of new safe, effective medications approved for pain. We encourage you to tell FDA what impact pain has had on your life and how speeding up the development of new drugs in the pipeline could make a difference to your life and the lives of so many others debilitated by chronic pain.

 

Electronic comments can be submitted here. Again, the deadline is Monday at 11:59 PM EST.

 

Your comment doesn’t have to be long to make a difference. What’s most important is that you submit one. This is one way that you can contribute to a better future for people with pain.

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The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

~~~~~

For My Home Page, click here:  

Welcome to my Weblog on Pain Management!

 

Please ignore the ads below. They are not from me.

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THE ADVERTISING BELOW IS NOT FROM ME.

Low Dose Naltrexone for Pain


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From NPR: 

In Tiny Doses, An Addiction Medication Moonlights As A Treatment For Chronic Pain

 

Alex Smith

 

Lori Pinkley, a 50-year-old from Kansas City, Mo., has struggled with puzzling chronic pain since she was 15.

 

She’s had endless disappointing visits with doctors. Some said they couldn’t help her. Others diagnosed her with everything from fibromyalgia to lipedema to the rare Ehlers-Danlos syndrome.

 

Pinkley has taken opioids a few times after surgeries but says they never helped her underlying pain.

 

“I hate opioids with a passion,” Pinkley says. “An absolute passion.”

 

Recently, she joined a growing group of patients using an outside-the-box remedy: naltrexone. It is usually used to treat addiction, in a pill form for alcohol and as a pill or a monthly shot for opioids.

 

As the medical establishment tries to do a huge U-turn after two disastrous decades of pushing long-term opioid use for chronic pain, scientists have been struggling to develop safe, effective alternatives.

 

When naltrexone is used to treat addiction in pill form, it’s prescribed at 50 mg, but chronic-pain patients say it helps their pain at doses of less than a tenth of that.

 

Low-dose naltrexone has lurked for years on the fringes of medicine, but its zealous advocates worry that it may be stuck there. Naltrexone, which can be produced generically, is not even manufactured at the low doses that seem to be best for pain patients.

 

Instead, patients go to compounding pharmacies or resort to DIY methods — YouTube videos and online support groups show people how to turn 50 mg pills into a low liquid dose.

 

Some doctors prescribe it off-label even though it’s not FDA-approved for pain.

 

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For discussion of mechanism and case reports of the remarkable efficacy of this anti-inflammatory medication, use search function top left above small photo. Thankfully his insurer is covering the cost of the compounded capsules.

 
 
 
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The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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For My Home Page, click here:  

Welcome to my Weblog on Pain Management!

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Opioid Intimidation – 29% Decline in Doctors Prescribing by 2017


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The New England Journal of Medicine published a report from Harvard researchers on March 14, 2019, entitled

Initial Opioid Prescriptions among U.S. Commercially Insured Patients, 2012–2017.

They found a “29% reduction in the number of providers who initiated opioid therapy in any patient who had not used opioids, from 114,043 in July 2012 to 80,462 in December 2017.”

Two of my own physicians, both distinguished, outstanding – an internist and a specialty cardiologist who does painful procedures – have said they will never prescribe opioids again. If I ever need an opioid for pain, it is possible I may never be able to get a prescription.

One of my pain management colleagues has defended 6 colleagues in the last 6 months before the Medical Board.

This is just the beginning of Opioid Intimidation perpetuated by government and CDC. It is deeply worrisome and it is getting worse.

We have a shortage of pain management specialists and those that have survived mostly do procedures, delegating prescription writing to PA’s and NP’s because it is time consuming and does not pay. There is a formidable barrier of denials by insurers for nonopioid medications, physical therapy, acupuncture, yoga, Pilates, cognitive behavioral therapy, and all compounded medications. Denials have become voluminous for at least 10 years. The process is not only time consuming, it is expensive, it wears us all down, inflicts horrific cruelty on patients, and to top it all off the appeals system is a joke.

Who would want to go into the pain management field ever again?

Stay tuned for more stories to come.

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The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

~~~~~

For My Home Page, click here:  

Welcome to my Weblog on Pain Management!

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CMS Criteria Do Not Accurately Identify Patients at Risk for Opioid Use Disorder, Overdose


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CMS criteria do not accurately identify patients at risk for opioid use disorder, overdose

Wei Y, et al. JAMA. 2019;doi:10.1001/jama.2018.20404.

February 15, 2019

 

The CMS opioid overutilization criteria may not accurately identify patients at risk for opioid use disorder or overdose, according to a research letter published in JAMA.

“Based on the CMS opioid overutilization criteria, the majority of the Medicare Part D patients diagnosed with opioid use disorder or overdose were not identified as ‘opioid overutilizers,’ and more than half of ‘opioid overutilizers’ did not develop opioid use disorder or overdose during the study period,” Yu-Jung Jenny Wei, PhD, Msc, assistant professor of pharmaceutical outcomes and policy at the College of Pharmacy, University of Florida, told Healio Primary Care Today. “The CMS criteria seem not to be a good clinical marker for identifying patients at risk for opioid-related adverse events.”

To estimate the predictive value of the CMS opioid overutilization criteria in correctly identifying prescription opioid users at risk for opioid use disorder or overdose, researchers used the 5% Medicare sample from 2011 through 2014 from which they identified between 142,036 and 190,320 beneficiaries who had at least one opioid prescription filled every 6 months, were continuously enrolled in Parts A, B and D and who met the CMS criteria as opioid overutilizers. Opioid utilization was defined as receiving prescription opioids with a mean daily morphine equivalent dose 90 mg from more than three prescribers and pharmacists or receiving a mean daily morphine equivalent dose of 90 mg by more than four prescribers.

Breaking the study period into three 6-month cycles, researchers examined the performance measures over time to assess if accuracy changed with increasing efforts to combat the opioid crisis. 

During any 6-month cycle, the proportion of beneficiaries who met CMS overutilization criteria ranged from 0.37% to 0.58%.

Throughout the entire 18-month follow-up, researchers found that the proportion of patients who had a diagnosis of opioid use disorder or overdose increased from 3.91% in the first cycle to 7.55% in the last.

In addition, researchers observed low sensitivity of the criteria which ranged from 4.96% (95% CI, 4.42-5.58) at the beginning of the study period to 2.52% (95% CI, 2.26-2.81) at the end (< .001).

 The CMS opioid overutilization criteria may not accurately identify patients at risk for opioid use disorder or overdose.Source: Adobe Stock

Positive predictive values ranged from 35.2% (95% CI, 32.14-38.38) to 50.95% (95% CI, 47-54.86) and specificity was greater than 99% in all cycles. 

“CMS has required their Medicare Part D plans to implement the criteria,” Wei said. “It’s unclear the effectiveness of such criteria in stopping our national opioid epidemic and whether there are unintended consequences of such implementation. As we are developing solutions to the opioid crisis, it’s important for policymakers, health care providers, hospitals and health insurance companies to be aware that solely relying on opioid prescription data is likely to be ineffective in identifying the high-risk populations for interventions.” – by Melissa J. Webb

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The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

~~~~~

For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Revision in CDC Opioid Guidelines Demanded


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Revision in CDC Opioid Guidelines Demanded

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  • by Shannon Firth, Washington Correspondent, MedPage Today February 15, 2019 

WASHINGTON — Pain patients tell Congress the CDC’s opioid guidelines are hindering access to vital medications, and an FDA panel recommends approval of esketamine for treatment-resistant depression.

Pain Patients to Congress: CDC’s Opioid Guideline Is Hurting Us

Patients with chronic pain are suffering from ham-handed efforts to curb opioid overdoses, a series of witnesses told the Senate Health, Education, Labor and Pensions (HELP) Committee on Tuesday.

In particular, the CDC’s 2016 guidelines for opioid prescribing came under heavy fire, as even a self-described supporter of its recommendations admitted the evidence base was weak.

Cindy Steinberg, national director of policy and advocacy for the U.S. Pain Foundation, argued that well-intentioned efforts to address the epidemic — particularly strategies to tamp down overprescribing — have stoked a “climate of fear” among doctors.

Thousands of patients with chronic pain have been forcibly tapered off their medications or dropped from care by their physicians, said Steinberg. (Physicians in California, under threat of medical-board sanction if patients die from overdoses, have reported similar reactions.)

Such decisions are “inhumane and morally reprehensible,” she said.

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The material on this site is for informational purposes only.

.
It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

~~~~~

For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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