2013 CRPS/RSD Awareness Walk hosted by Dr. Philip Getson, DO

Posted by twinklev

2013 CRPS/RSD Awareness Walk

This year’s walk is hosted by Dr. Philip Getson, DO and the Chairman is Dawn Hesser.

Date: Saturday, September 21, 2013
Location: Cooper River Park, Pennsauken Twp., New Jersey
Time: 8 am Registration, 9 am Walk starts
Registration: Click Here to register for the walk
Contact: Jim Broatch jwbroatch@rsds.org or 877.662.7737
Questions please email: crpsrsdwalk@gmail.com

Executive Vice President and Director
The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
99 Cherry Street
Milford, CT 06460
www.rsds.org
877-662-7737
203-882-8362 (f)

RSDSA :: Reflex Sympathetic Dystrophy Syndrome Association

www.rsds.org

Macy’s Shop for a Cause Saturday, August 24, 2013 Please help RSDSA provide education, support, and hope to all http://www.rsds.org/index2.html

Macy’s Shop for a Cause at RSDSA

The above walk is hosted during Pain Awareness Month. Please be supportive!

~Twinkle V.

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.

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

Posted by twinklev

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

CRPS/RSD and Suicide

Posted by twinklev

Over the years we have heard that suicides for CRPS/RSD (Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy) patients is the highest of all suicide rates.

This may not be as necessarily true as it seemed. This also does not entirely mean it’s false.

The following is an excerpt by the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) –

Suicide and Complex Regional Pain Syndrome (CRPS)
On June 23, 2012, Jill Harkany-Friedman, PhD, spoke to the RSDSA Board of Directors and invited guests on the topic of CRPS and Suicide Prevention. Dr. Harkany-Friedman is the Senior Director of Research and Prevention for the American Foundation for Suicide Prevention (AFSP). RSDSA asked Dr. Harkany-Friedman to speak because of recent suicides in the CRPS community. She assured us that although most individuals have fleeting thoughts of ending one’s life, suicide is relatively rare (12 out of 100,000). Furthermore, 90% of those who die by suicide have a diagnosable mental disorder, i.e. depression, anxiety, alcohol or substance abuse, and a potentially treatable mental disorder. We are posting her PowerPoint® presentation for your information.

I respectfully give all credit to the RSDSA for the above information.

While I respect the educated view of Dr. Harkany-Friedman the thought presents itself that she seems to be stating that nearly all those CRPS related suicides indeed had and underlying mental disorder therefore was the reason they took their own lives. I am not certain though. The estimates were on an over all amount of suicide percentages rather than CRPS specific.

I do apologize in advance for any misunderstandings.

I have rarely ever used offensive language in my posts, but in order for the general masses to understand what I mean in a blunt manner, I will come right out and say it, “Chronic severe pain is a mind and head fuck”. It becomes mental. We all know, at least most of us do, in order for us to feel pain, our brain has to feel it first.

That’s why coping strategies, meditation, relaxation, bio feedback, breathing exercises, guided imagery, aroma therapy and so many other techniques are necessary tools for the management of pain.

I have a hard time believing each of the CRPS suicides also had a mental disorder. Of course we’re mental. That doesn’t mean we have a mental disease, also.

It’s not all in our heads it’s in our bodies!

This also bring up another thought and that is if those suicides were CRPS misdiagnosis’. I hate to bring this up but there are some people who desire to be sick, who seek attention, who thrive on pity, who watch and listen to others for their symptoms so they can take what they learn to their own doctors and claim the same illness. Those people would have mental disorders.

In these cases I would hope the doctor’s were watching the objective findings rather than only listening to the subjective.

A little example,

30 people on a plane

Someone starts coughing and gagging suddenly, itching themselves all over. Making a scene for all to notice.

The person gets out of his seat and stumbles into another passengers and coughs all over him.

That person begins to worry he is catching something. He starts to itch himself.

Suddenly others are doing the same.

Next thing you know every one is hacking, coughing, itching and going nuts.

They all think they’ve contracted some illness, epidemic..

The problem is no one has it’s all in their heads. They only believe it to be true.

The first person never had anything at all. It was just a test.

This only goes to show the power of suggestion.

For some reason I tend to think that if deaths were related to CRPS/RSD we wouldn’t know that it was. Somehow some way it would be found and reported that that there was a psychiatric condition present or un diagnosed and that was the reason behind the suicide. Since nearly all CRPS/RSD patients have been diagnosed with depression secondary their illness, I have a feeling the depression would be used as the cause and not the horrible pain itself.

Suicidal ideations would be almost natural for anyone going through a painful hardship. The mind tries to free itself from ongoing pain and turmoil. It may plan and think of ways out, do things it wouldn’t normally do when more at ease, may even harm, cause bodily injury and so much more.

Self harming, cutting and causing bodily injury isn’t always a sign of suicide or suicidal ideations, sometimes it’s just a diversion to the original pain one is constantly feeling.

I think most CRPS/RSD’rs who have suicidal thoughts don’t really want to die at all, on the contrary they want to live.

They just need help managing their pain and most of them aren’t getting it.

~Twinkle Wood-VanFleet

Action Alert: Physicians for Responsible Opioid Prescribing (PROP) We must stop this Petition!

Posted by twinklev

October 11, 2012

Greetings!The RSDSA would like to make you aware of a petition currently before the Food and Drug Administration (FDA) that requests labeling changes for opioid analgesics (narcotic pain medications). Since many individuals with CRPS rely on opioids as part of their medication regimen, we wanted to bring this petition to your attention.

The petition, submitted by Physicians for Responsible Opioid Prescribing (PROP), requests three specific changes to opioid analgesic labels:

1- That they no longer be prescribed for “moderate” noncancer pain, but only for “severe” noncancer pain

2- That the maximum allowable dosage per day be equivalent to 100 mg of morphine for noncancer pain

3- That this medication can only be used for a maximum duration of 90 DAYS.

What this petition appears to mandate is a “one size fits all” prescribing mentality which DOES NOT benefit the chronic pain patients in general and CRPS patients in particular.

The RSDSA has chosen to oppose the PROP petition on behalf of you, our members. On Wednesday, October 10th, The RSDSA sent this opposition letter to the FDA. Cick Here to read RSDSA letter .

For those of you who would like to send your own individual response regarding PROP to the FDA, we encourage you to stress the specific details that your medication enables you to do that without it you would be unable to do. We suggest you use the following language to keep the message clear: My name is _______. As a person who suffers with the chronic and yet incurable pain of CRPS, I ask the FDA to deny the PROP petition. I use opioids as prescribed by my physician allowing me to function better and partake in life in ways I would be unable to do without this prescribed care.

To send your comments to the FDA click here.
The category to use for your response is Individual Consumer.

Your immediate action to this issue will make a difference. To read the PROP petition,

click here.

Please forward this email along to your friends and loved ones.

Should you have any questions or would like to receive further information, please email or give me a call.

Sincerely,

Jim Broatch
Executive Vice President and Director
RSDSA
877-662-7737
203-877-3790

Original Article- http://myemail.constantcontact.com/Urgent-Action-Requested–CRPS-Treatment.html?soid=1101383336163&aid=UTz5u591sNA

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