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!
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
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)
Inflammatory- Cytokines, Substance P, NGF, CGRP, TNF, IL-6
excite and sensitize pain receptors
Inflammatory cytokines are associated with Central and Mechanical
Hyperalgesia is an increase to sensitivity.
Allodynia is pain caused by non stimuli.
CRPS is associated with thermoregulatory problems.
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)
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
California State Ambassador Power of Pain Foundation
Founder- RSD(S)-CRPS Advisory www.CRPSAdvisory.com
Founder- RSD(S)-CRPS Advisory Info & Support Group
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 email@example.com
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.
I had headed off to sleep but I am back to elaborate on something. When I first met Barby Ingle she also told me I was beautiful more than once Again it made me feel shy and speechless. When our self image changes from this illness it doesn’t matter how many times someone may have been called cute, beautiful or even sexy in the past some of us have a hard time believing it. Weight gain, disfigurements, moderate to severe teeth changes, memory issues, loss of motor skills and coordination, or the ability to walk or use hands or arms, or just being a scatter brain and so forth can really alter a persons outlook of themselves. Beauty isn’t only in physicality. Barby talked to me for hours on the phone one night telling me how hard I was on myself and I was. It’s hard to still not be, but the bottom line is this is me, I have the power to change some of it and no power at all to change other parts of it. I have to love me for me. I love others for who they are no matter what and they should also. Well let me re phrase, I don’t care for ugly people and I’m not speaking in the physical sense. Be kind to yourselves. Give compliments and be thankful for the ones you receive. I am blessed to know so many beautiful people. Beautiful inside and beautiful out.
It’s your personality that makes you or breaks you!
Wishing you pain eased days and nights,
This blog has been edited to include the Slide Presentations of the RSDSA Integrated Solutions to CRPS Conference located at: http://www.rsds.org/education.html
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This blog has been edited to add a few photos from the conference itself, the evening of and the morning after. All photos belong to their rightful owners and may not be used without their permission. Each photo is linked with individual ownership.
Always be as well as you can be 🙂
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Hi, could you elaborate on what was said about Service Dogs? Thanks!