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

RSDSA Integrated Solutions to CRPS Conference May 10, 2013

The Experience by Twinkle Wood-VanFleet

TwinkleVanFleet-KaitlynPintor-JimBroatch

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.

 

RSDSAConferenceSFMay102013PhotobyCaseyCashman_1

 

2013-05-10_LorieEnriquez.JoHewitt.TwinkleVanFleet.CarusCulver.RSDSA.ConferenceTakenbyErikVanFleetjpg

TwinkleVanFleet.KaitlynPintor.JimBroatch_FromKaitlynsAlbum1

TwinkleVanFleet.RSDSAConferenceSFMay102013PhotoByYongWooLee_12013-05-10_MaryandJon1

2013-05-11_YongWooLee.KaitlynPintor.JimBroatch.KaitlynsDaughter.CaseyCashman.RSDSAConferenceSFTakenbyTwinkleVanFleet 2013-05-10_BethandTwinkleRSDSAConferenceSFTakenbyErikVanFleet

TwinkleVanFlleet.LisaKaye.RSDSAConferenceSFMay102013PhotobyLisaKaye

2013-05-11_YongWooLee.JimBroatch.KaitlynPintor.CaseyCashman.RSDSAConferenceTakenbyTwinkleVanFleet

2013-05-10_BethandTwinkleRSDSAConferenceSFTakenbyErikVanFleet1 2013-05-11_ErikVanFleet.RSDSAConferenceSFBayDay2TakenbyTwinkleVanFleet 2013-05-11_TwinkleVanFleet.RSDSAConferenceSFBayDay2b

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I will be attending the RSDSA’s Integrated Solutions to CRPS Conference on Behalf of the Power of Pain Foundation May 10, 2013

I am really excited to announce that in 4 days I will be attending the Reflex Sympathetic Dystrophy Assocation’s (RSDSA) Integrated Solutions to CRPS Conference at San Francisco California’s Airport and Double Tree Hotel.

I will be attending on behalf of the Power of Pain Foundation.

I am eager to learn all that I can while there so that my knowledge regarding CRPS/RSD continues  to expand.

I am very much looking forward to meeting the RSDSA team, listening to Guest Speaker’s, and meeting those attending from various Reflex Sympathetic Dystrophy (RSD) and Complex Regional Pain Syndrome (CRPS) Communities both online and offline.

I look forward to writing all about it after the conference.

Thank you Ken Taylor,  Barby Ingle and the Executive Board of the Power of Pain Foundation.

~Twinkle Wood-VanFleet

California State Ambassador- Power of Pain Foundation

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

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)

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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.

Sacramento Balloon Release Fundraising Event for the POPF

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