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

Posted by twinklev

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.

Now I Lay Me Down… (An RSD/CRPS Poem)

Posted by twinklev

This 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 Thomas, Chris 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…

NERVEmber (November) is National RSD/CRPS Awareness Month!

Posted by twinklev

November is our nationwide Reflex Sympathetic Dystrophy (RSD), Complex Regional Pain Syndrome (CRPS) Awareness Month!

The Power of Pain Foundation calls this Nervember. There’s 2 meaning’s behind it and I hope that I’m explaining it properly. Nerve of course would be for nerves, and the nerve pain and/or damage we experience and ember, coals, fire, what our pain feels like. Barby Ingle Executive Director of the POPF explains during her hour long interview on the Living with HOPE Radio show Monday October 29th, 2012.

You should be able to find that episode here: Living with HOPE with Guest Barby Ingle http://www.blogtalkradio.com/thebodymindandspiritnetwork/2012/10/29/living-with-hope

The episode is still availabe in the archives to either be listened to from Blog Talk Radio or by download. Barby also discusses several upcoming events for Nervember. Including a full day 6th Annual Arizona State Management Conference Webinar November 3rd, 2012.

For a really great blog, don’t forget to visit: Patient Awareness by the Power of Pain Foundation at www.PatientAwareness.org featuring writer and editor Chris Greulich. Still in it’s infancy, born only a few months back, you won’t want to miss this one. It’s growing by leaps and bounds. So much more pain and patient related information to come.

I can’t wait!

Patience Grasshopper…

Please support a loved one, friend, colleage, or even an acquaintance that you know who may be suffering from and attempting to survive this painful and debilitating neuro inflammatory auto immune disease. Even those you don’t know need your support.

We ask that you wear Orange as many times as possible throughout the month of November. Whether it be an awareness bracelet, clothing, anything. If you don’t have anything on hand, you can get into the spirit with us by making yourself an orange tag that say’s “I Support RSD/CRPS Awareness” or “I Hope for a Cure for RSD/CRPS”. Use your imagination, we’ll be thankful to you!

1000’s are getting together on November 5th, scattered throughout the world to wear orange in support of RSD/CRPS awareness day. The link to Rebecca Hale’s page is- https://www.facebook.com/events/251987344922784/

Don’t forget to tell everyone that you know to wear orange too and why. The more people you teach and who become educated in why we’re doing it can pass on what they’ve learned to the next person while wearing their orange and that person to the next..

and that person to the next..

If we all take part soon enough more and more people out there will become familiar with the words.. the letters..

R S D C R P S

Then we can rest easy and begin again.

What are you doing to this month in the name of RSD/CRPS awareness? Would love to hear from you!

A Review with Photos of Convoy of Hope Sept 15, 2012

Posted by twinklev

Having represented the Power of Pain Foundation as California Ambassador at the Convoy of Hope held at Cal Expo September 15th, 2012 in Sacramento California I’d like to thank the Power of Pain Foundation (POPF), Barby Ingle, Ken Taylor, POPF Board of Directors, Trudy Thomas, Chris Greulich, Convoy of Hope, Susan Gosselin, Jackie Jurek Miss Folsom Cali USA, Kurtis VanFleet POPF Jr. Ambassador and Volunteers of the day Erik, Kharisma and Erykah VanFleet for all their hard work and commitment.

I was and still am thrilled to have been able to promote awareness, distribute information, and answer questions related to Reflex Sympathetic Dystrophy Syndrome, Complex Regional Pain Syndrome/Causalgia and other neuropathic conditions. I also did a balloon release in the name of the Power of Pain Foundation, RSD/CRPS/Causalgia/Neuro Inflammatory Disease, Cure and Hope!

Cure is barely heard on the video as someone was hugging me at the time, but all other words are heard clearly even though I stuttered some. I’m putting together a slide show video of the event and hope to have it ready this month. It will consist of more photos an information of the event not just of the Power of Pain Foundation but of the entire day. All photos were taken by POPF Jr. Ambassador Kurtis VanFleet. A video of the balloon release will also be uploaded soon.

It was such a wonderful day, so many people were given free groceries, clothing, shoes, vision, dental and medical screenings, hair cuts, portraits, breakfast, lunch and so much more. This years turn out of a bit over 5,000 attendees was much lower than the previous years. The economy hurt this event from being even greater. Not enough donations to the Convoy of Hope, people couldn’t afford gas or public transportation to get there. People come from areas outside of Sacramento and weren’t able to this year.

People were camped out the night before the event to get in early, so gates were opened early, but also closed an hour early to accommodate for timing.

Total Guest Attendance- 5,832

Total Family Portraits- 955

Total Guests Prayed with- 4,698

Total Haircuts- 1,000

Total Women Served- (NBCF Tent)- 678

Total Shoes- 800+

Total Participating Organizations- 30

Total Volunteers- 1,763

1,400 Guests Served in the Clothing Tent

95 Dental Exams

50 Vision Exams

300 Received $500 Gift Certificates for follow-Up Vision Care

24 Pregnancy Exams

400 Served in the Job Tent

All these services were Free!

In addition thousands of pounds of food, water, and juice was distributed.

Medical, dental and vision supplies are costly.

Power of Pain foundation Table at Convoy of Hope

Jackie Jurek Miss Folsom Cali USA and Power and Pain CA Ambassador Twinkle VanFleet

Yesterday we received a Thank You Card from the Convoy of Hope. While the card was sent to me it very much belongs to the Power of Pain Foundation as a whole.

It is a shame that our economy is in such bad shape that even a good thing, an all free collaborative event was cut in half by those who were able to attend when we know the 1000’s who couldn’t be there needed the free groceries, medical exams and freebies that were offered and given away.

I pray for all those faces I seen. Those I spoke to and those I didn’t.

Let us all pray… for one another..

and let us TURN PAIN TO POWER… (powerofpain.org)

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

Posted by twinklev

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

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.

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

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.