Advocacy and Awareness: CRPS

Posted by twinklev

sad_facw_behind_a_smiling_face_by_mudabbirali-resized

Image Source: Sad Face Behind Mask by Mudabbirali

I had always maintained a level of balance when raising awareness for Complex Regional Pain Syndromes Type 1: Reflex Sympathetic Dystrophy and Type 2: Causalgia. My role was to provide accuracy over inaccuracies. Identifying, evaluating and sharing diagnostic criteria for the diagnosis of CRPS. In addition was the difference between CRPS and CPS (Chronic Pain Syndrome) Chronic Pain Syndrome is a compilation of chronic pain complaints which can include RSD or Causalgia, yet is NOT a CRPS itself.

Complex regional pain syndrome occurs in two types, with similar signs and symptoms, but different causes: Type 1. Also known as reflex sympathetic dystrophy syndrome, this type occurs after an illness or injury that didn’t directly damage the nerves in your affected limb.

Complex Regional Pain Syndrome Type 2 (CRPS Type 2) is a severely painful response to a peripheral nerve injury. CRPS Type 2 is characterized by severe, burning pain affecting a specific area as a result of the nerve injury.

Approximately 90 percent of people with Complex Regional Pain Syndrome have Type 1.

The McGill Pain Questionnaire

McGill Short Form Pain Questionnaire

McGill Pain Questionnaire (MPQ)

The McGill Pain Index

The McGill Pain Questionnaire, also known as McGill pain index, is a scale of rating pain developed at McGill University by Melzack and Torgerson in 1971. It is a self-report questionnaire that allows individuals to give their doctor a good description of the quality and intensity of pain that they are experiencing.

This index is subjective. Subjective means that your pain and symptoms are based solely on what you define them to be. It contains no objective findings to establish any certainty whatsoever.

This index leads you all to believe you have the worse pain disease known to man. Above Cancer. The index describes “Causalgia” which the majority of the people with this syndrome do not have.

Upon reading this many of you will suddenly decide that you have type 2. If you didn’t have type 2 there would be less reason to be incurable and in so much pain.

Do you know how many people over the years who have been diagnosed with RSD suddenly changed their own diagnosis to Causalgia upon learning the difference? Too many.

This is why the research and documented statistics are flawed. This is why the healthcare system fails to help us and instead classifies many of you with Chronic Pain Syndrome or Somatic Symptom Disorder.

According to the respected Dr. Philip Getson “Current estimates suggest that there are between two and ten million patients with this disorder worldwide. It is my personal belief that if you subscribe to the theory that fibromyalgia is in fact not a distinct and separate entity but rather a sub-sect of RSD (as I do), that number can be as much as five times higher.” http://www.drgetson.com/reflex-sympathetic-dystrophy.html

This is because RSD and Fibromyalgia share similar subjective results (trigger points/pressure points) and complaints in addition to some objective shared findings. Overactive nerves instigated by stress. The Fight or flight response.

I can assure you that Complex Regional Pain Syndromes Type 1: Reflex Sympathetic Dystrophy and Type 2: Causalgia can be drastically relieved and has the potential to be curable without drugs, sympathetic blocks, modalities or implantable devices.

I can no longer ascribe to the belief that CRPS is without possibility in healing. I’ll not tell people they’ll never get better, and I won’t be sharing the misinformation that advocacy groups expect of me. What I’ll share are the facts that surround this misunderstood syndrome and how we never have to end up disabled, sick, emotional and grieving over something that has a chance early on for an immediate remission, without years of failed treatments and medications and doesn’t ever have to lead to an end of no return.

I think I’ve proven that.

~Twinkle VanFleet, GohlProgram.com

In Memory of Mary LaBree – An Original RSD Advocate

Posted by twinklev

One of our original RSDS Advocates, Mary LaBree, passed away on October 15, 2015 due to complications from Reflex Sympathetic Dystrophy (RSD). Mary exemplified commitment to the RSD community for over 3 decades. As the Director of the New England RSDS Coalition since 1990, Mary sought to educate and bring awareness to the public and private sectors for the disease that was virtually unheard of back then. Originally from Leicester, Massachusetts, she was formally educated at Worcester State University in Worcester, Massachusetts.

Mary secured the JULY Proclamation for RSDS To urge all of the citizens of the Commonwealth to take cognizance of this event and participate fittingly in its observance. Given at the Executive Chamber in Boston, the twenty-fourth of June in the year two thousand and eleven, and of the Independence of the United States of America, the two hundred and thirty forth.” Massachusetts Bill # 5938

She worked both locally in Massachusetts and Nationally.

Mary formed and lead seminars, attended others, developed awareness events, distributed information and educational materials. She spoke with patients, caregivers, physicians, hospitals, insurance companies, fellow educators, universities, other peer groups, and those with an interest to learn about Reflex Sympathetic Dystrophy. She was involved with grants, research and fundraising.

When Mary LaBree began advocating for RSD in the 1980’s the term Complex Regional Pain Syndrome hadn’t been created. While other names had been used previously to describe Reflex Sympathetic Dystrophy (Syndrome) it was most often referred to as RSDS.

In 2012, she reached out to me and a friendship formed. We shared phone calls, messages and correspondence by snail mail. Mary sent me a copy of the photo of she and other’s of the original signing of her proclamation and a copy of the verbiage used to secure her proclamations. I’m privileged to know what Mary looks like. For now, I’ll not share those, nor have I ever. She shared with me 30+ years of everything. How she started, how she educated, how other RSD organizations began, her children, grandchildren, colleagues, the strength it takes to endure; not just in living with pain, but being a part of it.

If you pray, why worry… If you worry, why pray?

I had plans to meet her in person twice. The first time she had to return home early. I was supposed to meet her again toward the end of October or into mid-November. I had just spoken to her less than a week before her passing.

October 8

10/8, 4:04pm

Mary LaBree

I was in the hospital yesterday, I had an accident with my wheelchair when I tried to back it up ( standing in front of it. ) (Stupid me )when I pushed the button to back it up.. I pushed it the wrong way..And ran over my LEDs from the ankles to the knees. I was really blessed when the ER Dr. Asked what other problems did I have, & when I explained CRPS He said oh Chronic Regional Pain Syndrome , I said yes. He treated me with kindness & care. I’m going to send him a thank you card. He was really kind. You don’t always find a kind caring Dr..pls pray for me to recover. I have a lot of CRPS work to do. I will be leaving for CA in a few weeks. Ty.M

October 9

10/9, 5:22pm

Twinkle Wood-VanFleet

You’re always in my thoughts and prayers for your health, and your work, Mary. I do hope to meet you in November. xx

October 10

10/10, 10:07pm

Mary LaBree

Hi, Yes I’m looking forward to meeting you as well. I leave Oct 23 on. Friday. A lil less then 2 wks.I will call u sometime on the weekend after I arrive, hugs & lots of love.M

October 12

10/12, 7:04pm

Mary LaBree

I’m sorry I had a mistake that I didn’t want to have a group pls forgive me, as I pressed the wrong thing, & didn’t realize it until someone told me.

The next message on Oct 12, I missed due to being away and my IM being flooded and then she was gone. I was on the road to and from the Stanford Transplant Clinic for our daughter on the 15th and in the Emergency Department on the 16th due to my cervical spine. Trying to save the puppies life all in between.

The last message was in reference to an accidental group IM.

I had been wondering if she would want to make the plans to meet at the NERVEmber, West Coast Pain Forum for Power of Pain Foundation on November 14th. All I knew for certain is she planned to be here in Northern California on the 23rd of October and would call me.

Mary LaBree Melanie McDowell Awareness and Advocacy Award Nomination 2015 Slide property of @powerofpain

Permission granted and sent from the Power of Pain Foundation to share in Mary’s memory. Melanie McDowell Awareness and Advocacy Award Nomination 2015

I wish she would have received more nominations, but mine was the only one for her. She was most deserving.

We never know for certain where our conversations go even when we chit-chat on the phone or when we think they are in confidence. I don’t know what Mary ever spoke of me to others, but I know that she must have believed in me enough with what she did share with me to know I would keep it to me and if she didn’t know for sure when she told me she knew as time went on because I’ve never told it.

She asked me sometime in 2013 to consider being trained by her for her Coalition and new endeavors. While I was most honored, I respectfully declined as I was already committed to Power of Pain.

Our conversations also consisted of but weren’t limited to life, color, ethnicity, race, the olden days, differences, equality, change and today. She shared with me uncertainties about people, places and things, and I eased her in certain fear and prejudices. Please don’t misunderstand me, I’m not at all implying Mary was prejudice, in fact, she’s not, though conversations were simply sometimes deep. Mary listened and she learned. She watched, listened to gossip, dismissed it, listened more, read, picked it apart, put it together, and ultimately decided for herself. She wasn’t afraid to speak her mind or share a maybe, what if, what do you think or did you know.

I’m humbled to have been accepted, acknowledged, taught and even loved by her.

Mary was so proud of the New England RSDS Coalition, she was thrilled that the healthcare community was finally beginning to know what RSD (CRPS) is. She was pleased that patients had informational materials to seek out and be provided. She was happy that educational events were provided free to the public.

She told me the story behind July and why her proclamations are for the month of independence and not November. As I stated Mary began educating RSD over 30 years ago. July was chosen for freedom, freedom from pain. It wasn’t until many years later that a national color evolved, and then our month of recognition. Mary was grateful for her closest friends. I know she loved her beautiful friend, advocate and poet, Jane (Gonzales).

I prayed for her health and I prayed for her to achieve her life’s work, her mission to create awareness and educate on RSD, her purpose to continue doing so, and her hope for our future.

You did Mary! You really did! You achieved them all to the last breath.

And I thank you!

With gratitude, hugs and lots of love,

Miss you, won’t forget you,

Mary’s Facebook page: https://www.facebook.com/messages/mlabree1

Lets not forget the ones who started the path that gave way for us to do what we do. ~Twinkle V.

On behalf of all of us this one’s for you!

(Originally written at the end of October and updated today)

Reference to Mary’s favorite quote shared above. The above is shared the way she said it.

“If You Pray Don’t Worry… If You Worry Why Pray” sermon by Levi Wright

Author Donna Nefferdorf Releases “To Know Him Is To Love Him”

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– A Real Story of Healing With the Help of the Creator

Physical, emotional and spiritual challenges can be part of life. Author Donna Nefferdorf has faced them all and tells how she has been able to overcome these challenges with the help of the Great Physician in her new book “To Know Him Is To Love Him.”

The early response from readers to this heart-felt tale of faith has been remarkable.

July 12, 2014

No one can honestly deny the world is filled with suffering; physical illness, disease, and mental scars that have carried on for generations. Is there a way to heal? And is it open to each and every person, if they open up to be healed? This compelling subject is addressed, by author and minister Donna Nefferdorf in her recently released book “To Know Him Is To Love Him” that tells her real-life story of facing these kinds of issues and overcoming them, with the help of her faith and the Creator. Readers are reacting to the honesty and delivery of this message of hope, with enthusiasm.

“I really believe my book offers true hope and healing,” commented Nefferdorf. “To Know Him Is To Love Him, reveals the ‘power of God’s love’ to help anyone overcome their own life challenges. I’ve experienced this power of healing myself, and it’s a blessing to be able to share this experience with my readers.”

The book was published by Advanced Global Publishing in Shippensburg, PA, on June 27^th, 2014. It’s currently available across multiple formats including as a paperback through Amazon.com and BarnesandNoble.com and as an ebook from Ingram.

According to Advanced Global Publishing their goal of publishing the book, as well as all of their publishing projects is, “Sharing the love of God one heart at a time to advance the Kingdom of God on earth”. It’s very clear that “To Know Him Is To Love Him” is a book that embodies that goal, an effort to show the power of the divine to heal everyday problems and bring happiness and fulfillment. Nefferdorf eloquently helps readers boost their confidence, self-image, courage, and compassion as they come to see in life they are never alone while battling serious health problems, even life threatening ones, or in better times when they enjoy abundant life as the Creator intended.

Nefferdorf is a minister with Global New Beginnings, which aims to lead others to a “new beginning” with the Father, through a personal relationship with Jesus Christ.

According to early reviews, this new book should go a long way towards inspiring others to explore this relationship.

Evangelist Janice Hollan, recently said, “This book is my friend’s new release and God blessed me to endorse it! I would encourage all to read it! You will find hope, healing, and encouragement in your own life through the testimony of her storms!”

For more information be sure to visit http://www.globalnewbeginnings.com.

Donna is an RSDS Survivor and her story will tell you how. ~T

FAQ: Reflex Sympathetic Dystrophy | The Dr. Oz Show

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FAQ: Reflex Sympathetic Dystrophy | The Dr. Oz Show.

Philip Getson, D.O. • Yesterday (July 25, 2013) “I was given the honor of having a post on RSD featured on droz.com Please feel free to comment on it”
“I am delighted to get the disease the exposure it so deserves”. “Here is the link for the RSD post” These above are the personal words of Dr. Getson, I have quoted.
http://www.doctoroz.com/videos/faq-reflex-sympathetic-dystrophy

I am delighted that Q & A’s regarding CRPS/RSD (Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy) made it back to Dr. Oz. via Dr. Getson.

In addition, the differences between CRPS/RSD and Fibromyalgia were touched on.

Paula Abdul tried to do her part in sharing the debilitating outcome this illness causes, but as some of us know television editing can leave a lot out.

Even so I think Paula made her point. There were some people that tried to convince me of how terrible she did, I re watched that segment I can’t tell you how many times and the bottom line is she did great! How much can you do in so little time. It wasn’t an RSD specific show in the first place it was to showcase a vitamin line of healthier living. So yep, good job for what she had to work with.

For Dr. Philip Getson who has been educating and treating CRPS/RSD for decades, I am honored to have spoken to him briefly via email and look forward to again. I also look forward to the P.A.I.N. SUMMIT hosted by the Power of Pain Foundation during Pain Awareness month where he will be Guest Lecturing. I would love to meet him in person and attend the conference in Arizona but if not, I will still be attending via UStream and have already registered.

~Twinkle V.

RSDSA Integrated Solutions to CRPS Conference May 10, 2013- The Experience!

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RSDSA Integrated Solutions to CRPS Conference May 10, 2013

The Experience by Twinkle Wood-VanFleet

My husband Erik and I left Sacramento California at approximately 5:15 a.m Friday morning to head to the Reflex Sympathetic Dystrophy Assocation’s Integrated Solutions to CRPS Conference located in San Francisco California at the Double Tree Hotel Burlingame.

I was attending on behalf of the Power of Pain Foundation as their California State Ambassador, CRPS/RSD Advocacy, New CRPS information, Solutions, Reviews, Community, Friendships and the RSDSA for without them coming to San Francisco I would have never made one of their conferences for years if ever.

We arrived shortly before 8:00 a.m for registration check-in. Everyone at the RSDSA check in table was kind and very helpful.

We located our seats and chose not to sit too close to the front, but on an isle so that I would have easier access to move about as needed. So that some do not misunderstand this was not only due to my CRPS, I am pre surgery for another issue as well.

As we were getting coffee, Kaitlyn Stevens Pintor of the Bay Area Support Group and Guest Speaker at the Conference found me and introduced herself. We know each other online, but this was our first in person meet. She called me beautiful on 2 separate occasions, which made me blush, since she is really the beautiful one. She was also very kind and upbeat.

I know that many probably did not expect for me to have so many body piercings. Specifically my face. While they are included in all my online photos I can not always be certain if they are noticed or not. Judgement did cross my mind but was hoping since most already knew me online I would be judged by that, if anything. I am not ashamed of the piercings. I will go on to explain why in a moment. One thing I am very embarrassed of however is the decline of my teeth. The severe injury that caused my CRPS type 2 was in January of 2001. My teeth were perfect! By 2004 I had lost a filling, now I will lose all of my top teeth and need a full denture. It’s not just that I will lose them but the condition of them is beyond awful. Between medications and the CRPS that is where I am at. Without funds I’m at a stand still.

Lets move on.

Dr. Pradeep Chopra MD began discussing the Nervous System, Central Nervous System, Glia Cells, Central Sensitization, The Peripheral Nervous System.

He discussed how all sensations eventually travel to the Central Nervous System.

Pain signals from the body are processed even before they reach the brain.

CRPS is a dysfunction of the processing system.

In CRPS a barrage of pain signals from the body reach the spinal cord and a number of changes take place.

As the spinal cord and brain becomes flooded with this barrage of pain signals the nerves in these structures become hypersensitive.

NMDA receptors are activated

Glia Cells are activated.

Central Sensitization causes activation of certain receptors called NMDA receptors.

Decreased sensitivity to opioids.

Opioids, CRPS and Glia DO NOT get along.

Ketamine was approved in 1970 as an anesthetic.

Ketamine blocks NMDA receptors.

In CRPS it decreases central sensitization.

Rough estimates. 85% show improvement in their daily lives, reduction in their medication. It is not a cure! It helps the quality of life.

Low dose IV Ketamine administered over 4 hours. Increase based on response.

Follow up boosters on out patient basis as needed.

There is a sublingual (under the tongue or cheek) Ketamine Troche to be used in emergency flare up situation only.

Again Opioids and Narcotics are known to activate Glia though a receptor that is distinct from classical opioid receptors.

Dr. Peter Abaci MD and John Massey MD

Bay Area Pain and Wellness Center

Functional Restoration Program (FRP)

Pain can become a disease in itself!

Restore Function!

If you are from the Bay Area please look these doctors up.

Book- Pain Brain- Peter Abaci MD.

As many of you know I went to the Compass Center for Functional Restoration under Dr. Michael Levin MD of the Sacramento Pain Clinic and Director of Compass and Rick Wurster MSG, MPT, BCIAC who taught me so much at the program. I have life long support and can attend each Monday for the rest of my life. Please attend one if you can. It not only helps your physical body but all psychological aspects of pain. It can truly change your life.

Kaitlyn Stevens Pintor of the Bay Area Support Group

Building Community, real and virtual, organizing support groups both online and offline, weekly, monthly, annual fundraising and much more. Commitment!

On to more

DMSO 50%

Vitamin C can prevent CRPS after fractures. 500 mg for 1.5 months. Incidents of CRPS dropped significantly. (It doesn’t hurt to try)

Neurotropin- Available only in Japan. It helps with Allodyna and hyperalgesia. (It is in Clinical Studies here)

Service Dogs.

Inflammatory- Cytokines, Substance P, NGF, CGRP, TNF, IL-6

excite and sensitize pain receptors

Neurogenic inflammation

Inflammatory cytokines are associated with Central and Mechanical

Amplification

Hyperalgesia is an increase to sensitivity.

Allodynia is pain caused by non stimuli.

CRPS is associated with thermoregulatory problems.

Somatosensory Cortex

Body Distortion

Image Changes

The involved limb in perceived as larger.

The person can become hostile toward that limb.

They can disassociate themselves from their limb(s).

Changes are reversible and get better with time.

CRPS leads to substantial reorganization.

Primary Motor Cortex- Controls the voluntary movements of the body.

CRPS can lead to wide spread impairment.

Dystonia is involuntary movements of the body. (Changes in the motor cortex)

Brain Remapping. Example- Mirror Therapy (Mirror Box Therapy)

Avoidance/Fear Avoidance

Pain –> Fear–> Behavior Changes

Sharon Weiner- Don’t let RSD/CRPS define you and much more!

I also had the opportunity to meet Dr. Mark DeBruin of DeBruin Medical Center in Sacramento Ca.

While all of the information above was taken by hand written notes at the RSDSA Conference the original information and credit belongs to Jim Broatch, The RSDSA, Pradeep Chopra MD, Peter Abaci MD, John Massey MD (Bay Area Pain and Wellness Center), Sharon Weiner, and Kaitlyn Pintor.

I had the opportunity to lead Group 3 of patients at the conference. The question was asked earlier in the day “What is the best advice you’ve ever been given (throughout your journey with CRPS). At first I was quite nervous, but once settled it all came quite natural. Thank you Kaitlyn! I brought up the idea to Kaitlyn about writing each patients answer down and we did that! They were turned in at the end of the conference. I was honored to be chosen to lead Group 3. Thank you so very much again! I loved meeting and talking on an individual basis with each and every one of them.

My own answer to this question was when I wake up each morning to not tell myself how horrible or painful of a day it will be… when I have no way of knowing it yet.

I know it takes time to learn that one! So often we tell ourselves it’s just going to be that painful, but it doesn’t always have to be. Practice keeping those emotions down and your pain can be lower too.

Back to my piercings. I explained it during our group 3 session. I did not have these piercings pre injury/CRPS. I did it to divert my CRPS pain and while it only lasted hours to days it sidetracked me enough at the time. I was a late diagnoses. Again I was injured in Jan 26 of 2001, and while I went through the surgery to attempt to repair and another to remove the screw and 8.5 months of hard PT after etc etc, I was not diagnosed until 2003, did not get to Dr. Levin at Sacramento Pain Clinic until 2004 (second opinion and confirmation) and didn’t get a first block until 2006. That same year my trial spinal cord stimulator and permanent SCS were implanted. So I did a few stupid things including causing myself bodily harm. I no longer do those things but I can walk in the shoes of others who suffer. I suffered to survive. I hurt every day but I am alive! And now these piercings are me and I have to love me. Thank you to that group for understanding almost instantly however shocking it may have sounded initially.

And finally we were not able to stay for the 2nd day’s Cruise around the Bay, but at last minute did decide to stay the night. We did that for a couple of reasons. One was to get to know those present even more, another we were already so very tired having hardly slept the night before and up at 4 a.m for the trip, we rarely ever ever get out and about with others and it was mom’s day weekend. His gift to me! Along with baby roses he stashed here at home that he gave me today. I can plant them later.

We truly enjoyed our time with you, each staff member, patients and caregivers.

The slide presentations are located at: http://www.rsds.org/education.html

~Twinkle Wood-VanFleet

California State Ambassador Power of Pain Foundation

Founder- RSD(S)-CRPS Advisory www.CRPSAdvisory.com

Founder- RSD(S)-CRPS Advisory Info & Support Group

https://www.facebook.com/groups/RSDCRPSAdvisory.InfoSupport

Founder- Help The Power of Pain Foundation Assist Those with RSD/CRPS and Other Neuropathic Conditions

Founder- Causes Page same name as above- http://www.causes.com/CRPSA4POPF

Founder- Voices Carry- Where Your Voice Is Heard

This is a CRPS/RSD and Health Information Resource!
A page dedicated to sharing all things related to Complex Regional Pain Syndrome (CRPS Type 2)/Causalgia and Reflex Sympathetic Dystrophy (RSD/CRPS Type 1) and Health Topics.

Power of Pain on Facebook https://www.facebook.com/powerofpain

If I have written or stated anything offensive or in error, please contact me at:

If regarding the POPF: Twinkle VanFleet caambassador@powerofpain.org

If in general: Twinkle VanFleet Twinkle@crpsadvisory.com

A few photo’s of the conference itself, the evening after and the next morning. Each photo belongs to it’s rightful owner.

Jackie Jurek Appearing with the Power of Pain Foundation at Convoy of Hope Sept 15, 2012

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Introducing Jacqueline Jurek, a contestant in the nationally televised “Miss CALIFORNIA USA” Pageant, Jackie will be representing Folsom Cali USA and has joined the team at the Power of Pain Foundation.

Jacqueline Jurek is an aspiring neuropsychologist from Sacramento, California. She graduated High School in 2007 with honors at El Camino Fundamental and went on to SDSU where she recently graduated in May of 2012 with a Bachelors of Art in Psychology. She is currently in the process of applying for Clinical Psychology Grad School at Sac State While taking EMT classes at a Local Community College and interning with the Sacramento Country Coronors office in the Invesigative Department. In her spare time Jackie enjoys the outdoors, staying fit, and spending time with family and friends. Swimming, hiking, country concerts, and being involved with her church are among the activities she enjoys the most. She’s all for standing up for what you believe in, striving for your goals, and making sure not to take life too seriously that you forget to enjoy it.

As a contestant in the the nationally televised “Miss CALIFORNIA USA” Pageant, Jackie will be representing Folsom Cali USA and is excited to join the team at the Power of Pain Foundation with her passion in neuropsychology and is ready to help make a difference in her community and her fellow neighbors.Jackie will be making a special appearance at this years Convoy of Hope being held at the Cal Expo on September 15, 2012 where we will be distributing valuable and informative pamphlets, books and materials on Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome/Causalgia and Neuropathies, raising RSD/CRPS awareness, answering questions, having a photo book of RSD/CRPS limbs available for viewing, a free raffle and more.

Reflex Sympathetic Dystrophy Type 1, Complex Regional Pain Syndrome Type 2/Causalgia is a painful, debilitating, neuropathic and auto immune disorder. Reflex Sympathetic Dystrophy Syndrome (RSD) also known as Complex Regional Pain Syndrome (CRPS)/Causalgia is an illness first discovered by Weir Mitchel during the Civil War. Over 10 million people have been diagnosed in the U.S. Alone. The McGill Pain Index rates RSD a 42 out of 50 and is listed as the most painful chronic disease that is known. While it seems as if it is a rare disease it’s not, yet not many know about it. It’s our goal to change that.

RSD/CRPS is a physical condition. Any depression or psychological manifestations are secondary do to the illness and due to the fact it is so painful to live with.

Practical Management of Complex Regional Pain Syndrome
Eric S. Hsu, MD*

Abstract: Complex regional pain syndrome (CRPS) describes a diversity of painful conditions following trauma, coupled with abnormal regulation of blood flow and sweating, trophic changes, and edema of skin. The excruciating pain and diverse autonomic dysfunctions in CRPS are disproportionate to any inciting and recovering event. CRPS type I is formerly identified as ‘‘reflex sympathetic dystrophy.’’ CRPS type II is the new term for ‘‘causalgia’’ that always coexists with documented nerve injury. The present diagnostic criteria of CRPS I and II depend solely on meticulous history and physical examination without any confirmation by specific test procedure (or gold standard). There are only few clinical studies with large-scale randomized trials of pharmacologic agents on the treatment of CRPS. Bisphosphonates have been studied in multiple controlled trials, based on theoretical benefit of bone resorption, to offer pain relief and functional improvement in patients with CRPS.Many current rationales in treatment of CRPS (such as topical agents, antiepileptic drugs, tricyclic antidepressants, and opioids) are mainly dependent on efficacy originate in other common conditions of neuropathic pain. There are additional innovative therapies on CRPS that are still in infancy. No wonder all the treatment of individual CRPS case nowadays is pragmatic at best. Although the interventional therapies in CRPS (such as nerve blockade, sympathetic block, spinal cord and peripheral nerve stimulation, implantable spinal medication pumps, and chemical and surgical sympathectomy) may offer more rapid response, yet it is still controversial with unpredictable outcome. Nevertheless, we need to start pain management immediately with the ambition to restore function in every probable case of CRPS. An interdisciplinary setting with comprehensive approach (pharmacologic, interventional, and psychological in conjunction with rehabilitation pathway) has been proposed as protocol in the practical management of CRPS. It is crucial to have a high sensitivity value combined with a fair specificity in revising diagnostic criteria of CRPS. The validation and consensus for new rationalized diagnostic criteria of CRPS could facilitate further research to enhance clinical outcome including quality of life. These endeavors to minimize suffering from CRPS would certainly be appreciated by many patients and their loved ones.

keywords: complex regional pain syndrome, reflex sympathetic dystrophy, causalgia, pharmacologic

http://www.rsdsa.org/pdfsall/Hsu_AmJTher_2009.pdf

More recently we have learned that RSD/CRPS is a Neuro Inflammatory and Neuroautoimmune disorder. It can effect any part of the body. It can spread from a single limb to several and it can involve the internal body as well. This does not happen in all patients, but it can happen.

Not only will Jackie be representing the Power of Pain Foundation with me, but she will be available to take photos and sign autographs with the guests that come to our booth. Come support Jackie, the Power of Pain Foundation and the Convoy of Hope at this spectacular event! We hope to see you there! September is Pain Awareness Month!

If you have any questions or for further information

Contact: Twinkle VanFleet

CAAmbassador@powerofpain.org

916.850-0RSD(0773)

(This # is not for personal use)

www.PowerofPain.org

RSD / CRPS Limbs Montage

Posted by twinklev

By the Power of Pain Foundation “This video goes through pictures of RSD/CRPS patients who have visual symptoms of their extremities (hands, arms, legs and feet). RSD is a Neuro-Autoimmune condition which affects many aspects of the body. For more information visit Power of Pain Foundation. Special thanks to Twinkle and Kurtis VanFleet, and singer Page Jackson.”

Please share!

http://youtu.be/nsFs3EHpi-A

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

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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.

RSDCRPSAdvisory Support Group Opens It’s Doors to All Chronic Pain Sufferer’s

Posted by twinklev

Our Group originated to help inform, guide and support those diagnosed with Reflex Sympathetic Dystrophy Syndrome aka Complex Regional Pain Syndrome/Causalgia. For the families and friends of. Nearly everyone with RSD/CRPS will also have Fibromyalgia, although not everyone with Fibromyalgia will have ever have RSD/CRPS. RSD/CRPS is a Neuropathic pain Condition, Fibromyalgia isn’t. Fibromyalgia is still very painful (I know, I have it, too)

We are now expanding our group to offer the same support to all those struggling with Chronic Pain. If you are struggling with a chronic pain condtion of any kind or know someone who is, please let them know about us. We look forward to meeting you

We are a caring, loving, compassionate and understanding group of people who have been through a lot, yet we are not our without faults. We’ve not only endured pain, but surgeries, multiple diagnosis’, dealt with depression, anxiety, fatigue, insomnia. We’ve been mis understood, put down, been called drug seeker’s, addicts and more. Many of us have been alienated from family and friends.

https://www.facebook.com/groups/RSDCRPSAdvisory.InfoSupport/

A support system is necessary to achieve the best possible chance at a quality of life.

Our atmosphere is often playful, laughing and fun loving. Laughter is the best medicine and distraction ever! We will cry together, encourage one another, lift each other up when we fall. If you have an issue with another, please don’t hold malice in your heart… let it go. The stress and the tensing of your muscles will only cause you more pain. Breathe in, breathe out.

People sometimes have bad days, say things they don’t mean, say things they perhaps do mean, but pain often speaks louder than words themselves. Words can be let go, pain cannot be.

Chronic pain regardless of what the condition, disease or illness is.. is still pain. Neuropathic pain, Neuralgia, Fibromyalgia, Post Cancer Pain, Diabetic Neuropathy it’s all painful.

We want you to have an at ease, calm and peaceful experience.

This Group was created for you the people since it’s birth.

We welcome you, please join us!

Disclaimer: The information contained in the RSD CRPS Info & Support Group is meant to be accurate yet is not intended to replace official sources. Information contained herein should not be considered error-free and should not be used as the exclusive basis for decision-making. Use of our Websites and Group information is strictly voluntary and at the user’s sole risk. Other resources linked from these pages are maintained by independent providers. We do not monitor all linked resources and cannot guarantee their accuracy. We’re a community of patients, family or friends of. We’re not doctors, specialists, or lawyers.

We take threats and discussion of suicide very seriously. If we learn that you are emotionally unstable, even if the cause is chronic pain, we will intervene on your behalf by either notifying family members or calling your local police department. If we learn from your own words, Facebook posts, or from another that you are going to overdose on medications, or harm yourself in any way that could lead to the loss of your life, we will not turn away. This is not meant to interfere in your personal life, but instead to save your life. If you agree to join our support group, you agree to these terms and conditions. You’re not alone!

Need help?
In the U.S., call 1-800-273-8255 National Suicide Prevention Lifeline

Wishing you pain eased days and nights,

~Twinkle VanFleet Administration www.CRPSAdvisory.com

twinkle@crpsadvisory.com

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