Advocacy and Awareness: CRPS

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 
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Deliverance | Suicide

Deliverance

By Twinkle VanFleet

TwinkleV March 2 2016

March 2, 2016

Your secrets she carried them well

Your regrets, she could have taken to hell

 

Your confidences, she held inside so tight

Your lies she covered them

From pretend to spreading for headlights

 

She took the blames as her own

Most- right toward the gravestone

Taken for granted; abandoned

Alone

 

Your lies she hid to never tell

For your own rise, prizes and people

Drained, too much to hold onto

Take some? Not even a little

Except your own sins to confess at the steeple

 

Deceptions, other’s misconceptions, restless

Decisions; pained spirit, heart, body and bones

Liquid courage, that little bottle lured it

To breaking down glass houses and home stones

 

Upon the pavement

She spread her wings

Intent, mission served

Ignitions curved

Reasons observed, so well deserved.

 

Abide or suicide

Ignored,  no one to reach for

Many folks lost, blind to the signs

People are given up on for not enough time

 

Will swear to God they never saw anything blue

The beginning becomes the end,

Suicide ensues

 

Reaching out, passively pleading, Negative 10-4

Raining, blaming, scolded, but still loved them more.

Pressed, distressed, stressed, aggressed, led to arrest

51-49 and a half, leaped toward ridding someone elses mess

Deliverance, have you guessed?

Insist, persist, wouldn’t resist, did her best

Affirmative, 5150, tests failed, now you’re dismissed!

 

#StrongerThanPain

#CRPS #RSD #Suicide #Ideations #deliverance #5150 #poeticimagery

I truly am grateful for life, but not all tests and experiences are mine or just for me…

They’re yours, too.

 

 

Overcoming the Stress Response

comtragcrpsa1The Sympathetic Nervous System is derived of 2 components. The Sympathetic Nervous System (SNS) and the Para-Sympathetic Nervous System (PSNS) both of which makes up the Autonomic Nervous System. The Sympathetic Nervous System is also known as Fight, Flight or Freeze. Stress and the Brain can be a serious issue for many individuals. Related or unrelated to various diagnosis’. Over the years I have lisened to thousands of individuals with a multitude of diagnoses.

Most of which touch on the the Stress Response. The stress response is “The Sympathetic Nervous System”. The Sympathetic Nervous System is the Stress Response. It is Fight, Flight or Freeze.

Having Complex Regional Pain Syndrome Type 2/Causalgia, I’ve had to take pause for an extra peek. Was there something there in my life at the time to cause my body to take this abnormal path. Has the stress and idea of not being able to heal kept me in this abnormal pattern. For me and only me, I cannot dismiss it. I cannot seem to find anything solid, but our minds don’t always work that way conclusively.

I refuse to give up, yet I fall to my own victimization in that I, at times, give up. It doesn’t matter if it is for 5 minutes or for a day. I have the awareness to know that by giving in, am I somehow reconditioning that stress response. I think it is possible. I use many of the alternative techniques available to me on a regular basis. That is how I survive. I also know that I succumb to fears of the future. Fear is anxiety. Anxiety is fear. Fear and anxiety is stress.  Add stress to chronic pain and you, or I, will always have a vicious cycle to endure.

Rarely do I focus on the physical decline of my being, I am aware. If I did, I would continue to re trigger the same event each and every day. I don’t focus on the look, or what I see. I do have trouble with the fact I can’t get out on my own. I have been trying to clear the secondary issue of depression. Many of us believe we are reasonably well. That is what we represent. My family fell to a hard decline a few years ago and since then it has been non stop. Surreal in some ways. A living dream. My personality type is to fix. My family is everything. My husband, children, and my grandchild.

If I can’t fix it, love it, make it right then it is wrong to me.

I have been taught not to show pain behaviors and not to guard. This is almost nature to me. For years now. Seldom if at all.

Perhaps there are times, yet they would be minimal.

I am on my way to getting better! You won’t be able to until you get rid of everything heavy you ever carried. Why? Because chronic pain has a way of bringing it all back. Heavier than it ever was. You will keep everything inside you. All thoughts, misconceptions, hurts, perceived hurts. You will! You have to let it go. And once you do, you will find peace not only in yourself, but in your pain.

~Twinkle VanFleet

Overview of the Autonomic Nervous System

http://www.merckmanuals.com/home/brain_spinal_cord_and_nerve_disorders/autonomic_nervous_system_disorders/overview_of_the_autonomic_nervous_system.html

The sympathetic division of the autonomic nervous system maintains internal organ homeostasis and initiates the stress response.

https://www.boundless.com/physiology/textbooks/boundless-anatomy-and-physiology-textbook/autonomic-nervous-system-ans-14/physiology-of-ans-142/sympathetic-responses-750-9204/

Fight, Flight or Freeze: The Stress Response

http://psychcentral.com/blog/archives/2014/07/31/fight-flight-or-freeze-the-stress-response/

What is the Stress Response?

http://www.simplypsychology.org/stress-biology.html

Stress Management

http://www.mayoclinic.org/healthy-living/stress-management/in-depth/stress/art-20046037

Chronic Stress Puts Your Health At Risk

http://www.mayoclinic.org/healthy-living/stress-management/in-depth/stress/art-20046037

Post Traumatic Stress Disorder (PTSD)

http://www.nimh.nih.gov/health/publications/post-traumatic-stress-disorder-ptsd/index.shtml

Systemic Complications of Complex Regional Pain Syndrome

http://www.rsds.org/pdfsall/Systemic-Complications-of-CRPS.pdf

Now I Lay Me Down… (An RSD/CRPS Poem)

Poem Now I Lay Me Down by Twinkle Wood VanFleetThis poem is dedicated to all my RSD/CRPS brothers and sisters. It was written only a few months ago. For many years I had a popular poetry site called Golden Rainbow Poetry and became Golden Rainbow Poetry Creations as it evolved. I had a small business license back then under the same name.

Many of my poems have been lost, some have been found and others are hopefully backed up on a drive I have not located yet. From my earlier years of writing there is a journal type book somewhere that has dozens hand written in. I am hoping it is in the garage in a box.

Soon I will begin to share the ones I do have available. Some have been published in both hard print and audio, in hard bound compilations of 100’s of poets together in 1 book, 4 of my poems live inside those, others on various internet sites. I wrote a poem for 911 that is on audio. The project was published as both hard bound book with an audio CD, mine made it to the audio part.

Each of my poems have a mood, some in imagery that leaves the reader to wonder the meaning and also to connect with the words themselves.

Some of these poems could come from the reader themselves. It could be anyone, anywhere and at anytime.

It is still Nervember (November) National RSD/CRPS Awareness Month. I hope the poem above brings a bit of awareness to those who can’t seem to grasp the meaning of RSD/CRPS. Or… What it feels like.

A special thanks to Barby Ingle, Trudy ThomasChris Greulich, and the Power of Pain Foundation.

Thanksgiving is less than 2 days away. I have much thanks to celebrate. Especially for the having the very best husband in the world, my children, grandson and the fire in my flesh and bones I survive however hard.

I am thankful for those friends mentioned above.  I am thankful for my mom, sister and extended family. I am thankful for being here to help others, I am thankful for those who help me.

Happy Thanksgiving!

Always be as well as you can be

Wishing each of you pain eased days and nights…

 

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

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
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)
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RSD / CRPS Limbs Montage

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

Convoy of Hope

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.