Action Alert: Physicians for Responsible Opioid Prescribing (PROP) We must stop this Petition!

Posted by twinklev

October 11, 2012

Greetings!The RSDSA would like to make you aware of a petition currently before the Food and Drug Administration (FDA) that requests labeling changes for opioid analgesics (narcotic pain medications). Since many individuals with CRPS rely on opioids as part of their medication regimen, we wanted to bring this petition to your attention.

The petition, submitted by Physicians for Responsible Opioid Prescribing (PROP), requests three specific changes to opioid analgesic labels:

1- That they no longer be prescribed for “moderate” noncancer pain, but only for “severe” noncancer pain

2- That the maximum allowable dosage per day be equivalent to 100 mg of morphine for noncancer pain

3- That this medication can only be used for a maximum duration of 90 DAYS.

What this petition appears to mandate is a “one size fits all” prescribing mentality which DOES NOT benefit the chronic pain patients in general and CRPS patients in particular.

The RSDSA has chosen to oppose the PROP petition on behalf of you, our members. On Wednesday, October 10th, The RSDSA sent this opposition letter to the FDA. Cick Here to read RSDSA letter .

For those of you who would like to send your own individual response regarding PROP to the FDA, we encourage you to stress the specific details that your medication enables you to do that without it you would be unable to do. We suggest you use the following language to keep the message clear: My name is _______. As a person who suffers with the chronic and yet incurable pain of CRPS, I ask the FDA to deny the PROP petition. I use opioids as prescribed by my physician allowing me to function better and partake in life in ways I would be unable to do without this prescribed care.

To send your comments to the FDA click here.
The category to use for your response is Individual Consumer.

Your immediate action to this issue will make a difference. To read the PROP petition,

click here.

Please forward this email along to your friends and loved ones.

Should you have any questions or would like to receive further information, please email or give me a call.

Sincerely,

Jim Broatch
Executive Vice President and Director
RSDSA
877-662-7737
203-877-3790

Original Article- http://myemail.constantcontact.com/Urgent-Action-Requested–CRPS-Treatment.html?soid=1101383336163&aid=UTz5u591sNA

We need community help to become an Exhibitor at the Sacramento’s Convoy of Hope

Posted by twinklev

Sponsor/ Donation Request

In-Kind and Cash donations are Tax deductible

For Immediate Release: June 26, 2012

RE: Exhibitor at the Sacramento’s Convoy of Hope event

The Power of Pain Foundation (POPF) is hoping to become an exhibitor at the Sacramento’s Convoy of Hope event. The event will take place on September 15, 2012 at the Cal Expo. The Power of Pain Foundation is a nonprofit 501(C)(3) charity. All donations are tax-deductible. We really need your help! We must raise $2,000. We will be able to reach 20,000+ people who attend the event and distribute awareness information, provide resources to the community, host a balloon launch, and answer questions. We need donations now to raise funds to participate in this great event during September 2012 – National Pain Awareness month.

Our goal at the Convoy of Hope event is to inform the public that Reflex Sympathetic Dystrophy and other neuropathy conditions do exist, there is hope and help.

Please help us attend this event and reach Californians with this important information and resources. Donors of $25 or more will have their names listed on the Power of Pain Foundations Website with over 1,000,000 page views a year and our social media pages (Facebook, Twitter, Linked In), and our newsletter and email blasts, reaching over 8,000 direct people.

Thank you for your consideration.

Twinkle VanFleet

POPF California Ambassador

Media Contact Information:

Twinkle VanFleet

CAAmbassador@powerofpain.org

twinkle@crpsadvisory.com

916-850-0RSD (0773)

More on the Power of Pain Foundation

The Power of Pain Foundation (POPF) provides community based support services that address the needs of chronic pain patients with Neuropathy conditions such as RSD/CRPS, Post Cancer Pain, Lyme, MS, Fibromyalgia, Diabetic Neuropathy, and many more. Accordingly, beneficiaries include patients who are economically and socially affected by these invisible diseases. Whether you have Neuropathy pain or are a caregiver, family member, or friend of someone diagnosed, we help you face the challenges and life changes of chronic nerve pain, head on. The Power of Pain Foundation’s federal ID number is 65-1298571.

The POPF works throughout the United States to promote awareness for Neuropathy conditions. One such condition is Reflex Sympathetic Dystrophy, also known as RSD/CRPS, and Causalgia. More than 10 million people have been diagnosed with RSD in the United States alone. RSD has a score of 42 out of 50 on the McGill Pain Index, the highest of all medical conditions known to man. There is no cure to date.

More on the Sacramento Convoy of Hope event

“The Sacramento Convoy of Hope is a collaborative effort between dozens of local churches, businesses, social service organizations, local government and Convoy of Hope. This all-volunteer event mobilizes hundreds of area residents to serve and make a difference in their community. Strong participation by local businesses, churches, community agencies, and individuals is crucial to the success of this event. Bring your family and enjoy free services and entertainment, with more than 100,000 pounds of free groceries. There will be a health fair, job fair, free medical and dental screenings with local doctors, medical professionals and dentists, kid’s zone, free haircuts, dozens of free carnival games, inflatable’s and live entertainment. Also, free family portraits courtesy of local photographers, community services, dozens of local community service organizations and free BBQ lunch.”

213 Nottingham Drive, Colonial Heights, VA 23834, 804-657-PAIN(7246)
38556 N. Dave Street, Queen Creek, AZ 85240, 480-882-1342
A 501 (c) (3) not for profit organization – 65-1298571
www.powerofpain.org

Checks and Money orders from around the world can be sent to the address above. Please add Convoy of Hope to the memo. Or go to our website at: http://powerofpain.org/donate/ and choose your option.

Paypal account ID- donate@powerofpain.org

All donations go right back into serving you and the Convoy of Hope itself.

I can accept cash in person in Sacramento only. A receipt with both our signatures and information will be required to maintain proper records for the Power of Pain Foundation.

In addition, the Power of Pain Foundation is Hosting an Online Auction Fundraiser to help us become an exhibitor and the Convoy of Hope. We must raise funds to complete the mission of raising awareness and support for the conditions listed above.

We’re also seeking donations Sacramento area businesses who would be kind enough to offer us gift certificates, vacations, airline tickets, accessories, jewelry, hair salon certificates, spa’s, handmade items, etc for our auction.

We’re also seeking area residents who might have items to donate.

Again all items are tax-deductible.

Sponsors include: (updated daily)
Business Donors

Absolute Investigations

Individual Donors
Dani Meyers
VanFleet Family
Taylor Family

Convoy of Hope Fundraiser 2012

Facebook events Convoy of Hope Online Auction Fundraiser 2012

We would be grateful if you joined our event page and attended the auction.

Feel welcome to add me on Facebook- www.facebook.com/rsdcrpsfire

We look forward to serving you!

Thank you!

~Twinkle V.

Living with HOPE Radio discusses Dr. Oz w/ Special Guest Paula Abdul

Posted by twinklev

Hi everyone

I’ll be joining Host Trudy Thomas as your co host tomorrow morning (Tuesday May 29, 2012) on the Living with HOPE radio show at 11:00 am PST (2 pm EST) for a special 2 hour show on how you felt about last weeks Dr. Oz show with special guest Paula Abdul. There has been a tremendous amount of differing opinions, many feel that not enough was said about RSD which led to misinformation, others feel that at least RSD was mentioned on national tv. This is your opportunity to come share your thoughts. And do not forget, if you want to call in live and speak with the host, be sure to dial (347)884-9691. You will be placed into the caller queue where you will still be able to hear the show while you are on hold. We hope to see you there! (Please forward and share to your groups) Thank You!

http://www.blogtalkradio.com/thebodymindandspiritnetwork

English: Paula Abdul attending L.A. Fashion Week at Smashbox Studios, Culver City, CA on March 22, 2007 – Photo by Glenn Francis of http://www.PacificProDigital.com (Photo credit: Wikipedia)

Sacramento Balloon Release Fundraising Event for the POPF

Posted by twinklev

As the Event Coordinator and California Ambassador for the Power of Pain Foundation (POPF) I would like to invite you to Help raise awareness in a balloon release fundraiser project this summer in Sacramento California for Reflex Sympathetic Dystrophy Syndrome (RSD) aka Complex Regional Pain Syndrome (CRPS) and Chronic Pain issues. Each balloon/balloon bunch will have a 4 sided tag attached. The tag will include your name/business name and short message, POPF Info, and RSD Info.

Saturday, July 21, 2012 – 11:00 a.m. until 3:00 p.m.

Location- To be announced

Pricing is:

$2-1 balloon

$5-3 balloons

$8-5 balloons

$16-10 balloons

Pre-order Balloons at http://powerofpain.org/fundraising, be sure to include your name and short message in the comment section when completing your order. Names will also be posted on our website!

You do not have to be present in Sacramento California to participate. We will release your balloon or balloon bundles for you.

All purchases are tax deductible. The Power of Pain Foundation is a non profit 501(C)(3) Charity.

Not only will this help our cause, but will also give you advertising opportunities whether as a business, organization, foundation or individual. Your name, business name etc will be included on the tag released into the air.

Whoever finds it will not only learn about our us but you also.

For more information and to watch for updates including upcoming location Please visit and check back regularly at Public Event by Twinkle VanFleet and Barby Ingle at https://www.facebook.com/events/314514498596759/

Please help us and join our cause! We’re helping to raise continued awareness for Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome/Causalgia, Post Cancer Pain, and Diabetic Neuropathy.

We’re supporting the Power of Pain Foundation (POPF) in their ongoing efforts to assist patients and caregivers dealing with these and other life altering Neuropathies. Beneficiaries include patients who are economically and socially affected by these invisible diseases.

Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome/Causalgia that effects over 10,000,000 people in the United States alone. It is also an auto-immune disorder.

RSD/CRPS is a painful, progressive and often debilitating, neurological disorder that affects the network of nerves along the spinal cord. The Sympatheic Nervous System is commonly known as “Fight or Flight”. The left side of our brain contains the Para Sympathetic, the calm side and the right contains the Sympathetic. Imagine a frightful event, a tiger enters the room. The fight or flight response is our basic human instinct of survival. Fight the animal off, and face the serious consequences (fight) or get the heck out of there (flight aka fly away).

Image that a car alarm has been activated. You’re not sure why it was barely touched. It continues on with the loud noise. You finally realize that nothing you do is stopping it. Sensitivity may have triggered it but in any event it never shuts off. In this analogy there is no solution to shutting the alarm down. None!

Of course the option would have been to either cut the wires to cease the noise or to somehow dismantle or uninstall the system causing it. The alarm is the non stop seemingly never ending pain that a RSD/CRPS patient feels constantly.

There is no cure to date! Hope to see you there!

If you have RSD/CRPS and are interested in possibly working this event with me or can help in anyway please email me at twinklevanfleet@crpsadvisory.com

RSD(S)-CRPS Advisory Info & Support Group

Posted by twinklev

Support Groups are necessary for those who need understanding and comfort when dealing with chronic illnesses other’s don’t understand. We offer one you can feel at home in.

RSD(S)-CRPS Advisory Info & Support Group

Years ago I had an RSD Support Group at MySpace. At the time it was one of the largest support group for RSD/CRPS there. As MySpace went through its changes and removing some features, I went to work as a volunteer Support Leader for MD Junction at the Reflex Sympathetic Dystrophy Support Forum. I’ve been a Leader there since 2009 and second to the top in seniority.

Since I lost my group at MySpace, I waited to create another of my own until I felt confident with the venue I would decide to hold it at. Since millions of people are on Facebook for various reasons I chose to create it there since there are several options available and a very large and spread out community of pain patients.

Less than a year ago I created the RSD(S)-CRPS Advisory Info & Support Group. I was slow on the start up since within a week of creating it, I ended up in a severe and long lasting flare up. The Group is doing well and growing at a steady pace.

This time I am not running solo. In the past I’ve been an advocate and spokesperson for RSD/CRPS, promoting, advertising, endless hours of research, writing essays and articles, sharing accurate information, staying updated, maintaining my website etc the best that I could. All by myself. It’s really hard. At least for me these last couple of years. I’m in my 11th year of CRPS. My energy is minimal.

Now I have someone to work with me. And currently we’re both working on fundraising and awareness projects for the Power of Pain Foundation as a team and in conjunction with our group. My Co Administrator Wanda will be raising awareness via 2 Expo’s and I’ll be doing so by holding a balloon release project.

We’re also supporting the POPF via Causes. Our page is called “Help the Power of Pain Foundation Assist Those with RSD/CRPS & Other Neuropathic Pain Conditions”

Our group is devoted to the support and guidance of RSD/CRPS patients, family and friends of.

Our mission is to teach and be taught…

…It’s our hope to educate and learn.

We’re a family oriented group. Caring and compassionate. Stop by and take a peek. We would love to have you join us and become part of our online family.

We have a Wonderful Co Administrator (Wanda) and Great Group Leader’s. Our discussions include pain management, the pain we endure on a daily basis, medications, alternative methods of pain control, the use of vitamins and supplements, depression, biofeedback, cognitive beliefs, coping strategies, flare up protocols, clinical trials, various therapies and techniques, meditation, yoga, the use of distraction and modalities, physical therapy, each other and so much more.

We also allow you to share other RSD/CRPS related information sites, books, videos, including your own website, blog, foundation, organization, or media pages. This is for the purpose of spreading further awareness and information around the web and hopefully off also.

All we ask is that you don’t spam us.

We would also be thankful if you shared us with others as well.

Click on our banner above to go to our website

Hope to meet you in our Support Group!

Wishing you pain eased days and nights,

~Twinkle

Faces of Pain Video 5 by the Power of Pain Foundation

Posted by twinklev

The Power of Pain Foundation is a 501(C)(3) Non Profit Charity dedicated to the heath and welfare of patients and caregivers struggling with Reflex Sympathetic Dystrophy RSD, Complex Regional Pain Syndrome CRPS and other Neuropathic Illnesses such as Diabetic Neuropathy and Post Cancer Pain.

There are 10 million people diagnosed with RSD/CRPS in the U.S. alone. This is a chronic, painful, debilitating and often progressive autoimmune and neurological disorder that affects the Sympathetic Nervous System and the network of nerves along the spinal cord that send messages to the brain.

These are the faces of survivor’s

This video was produced by Twinkle and Kurtis VanFleet of RSD(S)-CRPS Advisory

The POPF and the Living with HOPE Radio Show

Posted by twinklev

Great news!

The Power of Pain Foundation (POPF) and Barby Ingle are now sponsoring the Living with HOPE Radio Show with your Host Trudy Thomas.

Trudy’s goal is to promote awareness for the millions of people who struggle with chronic pain daily. To let people know they are not alone in their struggle and that there is life after diagnosis. Trudy discusses various therapies and the emotional turmoil of having a chronic incurable condition such as
RSD/CRPS and coming out on the other side.

People often times wonder where the money goes that they donate to an organization or foundation.

The Power of Pain Foundation is a 501(C)(3) non profit charity. All donations are tax deductible.

We’re passionately promoting the Power of Pain Foundation so they can continue to serve patients and caregivers dealing with Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome, Post Cancer Pain, Diabetic Neuropathy and other painful neuropathic conditions. Our fundraising page exists in an effort to help serve their the cause.

Beneficiaries include patients who are economically and socially affected by these invisible diseases. The POPF will help you face the challenges and life changes of chronic nerve pain, head on.

Donations are also used to serve the public in order to promote RSD/CRPS, Neuropathic and Chronic Pain awareness via Radio and other media. The sponsorship of the Living with HOPE radio show will serve that purpose.

~Twinkle V.

Living With HOPE | Internet Radio | Blog Talk Radio

Posted by twinklev

Living With HOPE | Internet Radio | Blog Talk Radio.

Promoting Awareness- Your thoughts and stories welcome.

Posted by twinklev

In the effort to promote awareness, resources and information regarding Reflex Sympathetic Dystrophy Syndrome/Complex Regional Pain Syndrome, aka, RSD, RSDS and CRPS these sites have been created so that understanding might come from them.
RSD Advisory and RSD Advisor are mirror dot.com sites

www.RSDAdvisor.com and www.RSDAdvisory.com

Here at RSD Advisory-WordPress you can leave comments, add your own stories, and tell the world of anything you might like to add. Just add it to the comment area of this post or one of the blogs that best fits you.

Thank you for supporting my passion to promote education, to date there is still no cure.

Best of wishes to you all

~twinkle/ellaj

Peripheral Neuropathy

Posted by twinklev

What is Peripheral Neuropathy?

Peripheral neuropathy describes damage to the peripheral nervous system, which transmits information from the brain and spinal cord to every other part of the body.

More than 100 types of peripheral neuropathy have been identified, each with its own characteristic set of symptoms, pattern of development, and prognosis. Impaired function and symptoms depend on the type of nerves — motor, sensory, or autonomic — that are damaged. Some people may experience temporary numbness, tingling, and pricking sensations, sensitivity to touch, or muscle weakness. Others may suffer more extreme symptoms, including burning pain (especially at night), muscle wasting, paralysis, or organ or gland dysfunction. Peripheral neuropathy may be either inherited or acquired. Causes of acquired peripheral neuropathy include physical injury (trauma) to a nerve, tumors, toxins, autoimmune responses, nutritional deficiencies, alcoholism, and vascular and metabolic disorders. Acquired peripheral neuropathies are caused by systemic disease, trauma from external agents, or infections or autoimmune disorders affecting nerve tissue. Inherited forms of peripheral neuropathy are caused by inborn mistakes in the genetic code or by new genetic mutations.

Is there any treatment?

No medical treatments exist that can cure inherited peripheral neuropathy. However, there are therapies for many other forms. In general, adopting healthy habits — such as maintaining optimal weight, avoiding exposure to toxins, following a physician-supervised exercise program, eating a balanced diet, correcting vitamin deficiencies, and limiting or avoiding alcohol consumption — can reduce the physical and emotional effects of peripheral neuropathy. Systemic diseases frequently require more complex treatments.

What is the prognosis?

In acute neuropathies, such as Guillain-Barré syndrome, symptoms appear suddenly, progress rapidly, and resolve slowly as damaged nerves heal. In chronic forms, symptoms begin subtly and progress slowly. Some people may have periods of relief followed by relapse. Others may reach a plateau stage where symptoms stay the same for many months or years. Some chronic neuropathies worsen over time, but very few forms prove fatal unless complicated by other diseases. Occasionally the neuropathy is a symptom of another disorder.

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) and other institutes of the National Institutes of Health (NIH) conduct research related to peripheral neuropathies in laboratories at the NIH and also support additional research through grants to major medical institutions across the country. Current research projects funded by the NINDS involve investigations of genetic factors associated with hereditary neuropathies, studies of biological mechanisms involved in diabetes-associated neuropathies, and investigations exploring how the immune system contributes to peripheral nerve damage. Neuropathic pain is a primary target of NINDS-sponsored studies aimed at developing more effective therapies for symptoms of peripheral neuropathy. Some scientists hope to identify substances that will block the brain chemicals that generate pain signals, while others are investigating the pathways by which pain signals reach the brain.

Select this link to view a list of studies currently seeking patients.

Organizations

American Chronic Pain Association (ACPA)
P.O. Box 850
Rocklin, CA 95677-0850
ACPA@pacbell.net
http://www.theacpa.org
Tel: 916-632-0922 800-533-3231
Fax: 916-632-3208

Neuropathy Association
60 East 42nd Street
Suite 942
New York, NY 10165-0999
info@neuropathy.org
http://www.neuropathy.org
Tel: 212-692-0662
Fax: 212-692-0668

Related NINDS Publications and Information

Chronic Pain: Hope Through Research
Chronic pain information page compiled by the National Institute of Neurological Disorders and Stroke (NINDS).

Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892

The information provided here is in the public domain. My thanks to NINDS and the NIH for allowing it to be freely copied.

~twinkle/ellaj