Advocacy and Awareness: CRPS

sad_facw_behind_a_smiling_face_by_mudabbirali-resized

Image Source: Sad Face Behind Mask by Mudabbirali

I had always maintained a level of balance when raising awareness for Complex Regional Pain Syndromes Type 1: Reflex Sympathetic Dystrophy and Type 2: Causalgia. My role was to provide accuracy over inaccuracies. Identifying, evaluating and sharing diagnostic criteria for the diagnosis of CRPS. In addition was the difference between CRPS and CPS (Chronic Pain Syndrome) Chronic Pain Syndrome is a compilation of chronic pain complaints which can include RSD or Causalgia, yet is NOT a CRPS itself.

Complex regional pain syndrome occurs in two types, with similar signs and symptoms, but different causes: Type 1. Also known as reflex sympathetic dystrophy syndrome, this type occurs after an illness or injury that didn’t directly damage the nerves in your affected limb.

Complex Regional Pain Syndrome Type 2 (CRPS Type 2) is a severely painful response to a peripheral nerve injury. CRPS Type 2 is characterized by severe, burning pain affecting a specific area as a result of the nerve injury.

Approximately 90 percent of people with Complex Regional Pain Syndrome have Type 1. 

The McGill Pain Questionnaire 

McGill Short Form Pain Questionnaire

McGill Pain Questionnaire (MPQ)

The McGill Pain Index 

The McGill Pain Questionnaire, also known as McGill pain index, is a scale of rating pain developed at McGill University by Melzack and Torgerson in 1971. It is a self-report questionnaire that allows individuals to give their doctor a good description of the quality and intensity of pain that they are experiencing.
This index is subjective. Subjective means that your pain and symptoms are based solely on what you define them to be. It contains no objective findings to establish any certainty whatsoever.
This index leads you all to believe you have the worse pain disease known to man. Above Cancer. The index describes “Causalgia” which the majority of the people with this syndrome do not have.
Upon reading this many of you will suddenly decide that you have type 2. If you didn’t have type 2 there would be less reason to be incurable and in so much pain.
Do you know how many people over the years who have been diagnosed with RSD suddenly changed their own diagnosis to Causalgia upon learning the difference? Too many.
This is why the research and documented statistics are flawed. This is why the healthcare system fails to help us and instead classifies many of you with Chronic Pain Syndrome or Somatic Symptom Disorder.
According to the respected Dr. Philip Getson “Current estimates suggest that there are between two and ten million patients with this disorder worldwide. It is my personal belief that if you subscribe to the theory that fibromyalgia is in fact not a distinct and separate entity but rather a sub-sect of RSD (as I do), that number can be as much as five times higher.” http://www.drgetson.com/reflex-sympathetic-dystrophy.html
This is because RSD and Fibromyalgia share similar subjective results (trigger points/pressure points) and complaints in addition to some objective shared findings. Overactive nerves instigated by stress. The Fight or flight response.
I can assure you that Complex Regional Pain Syndromes Type 1: Reflex Sympathetic Dystrophy and Type 2: Causalgia can be drastically relieved and has the potential to be curable without drugs, sympathetic blocks, modalities or implantable devices.
I can no longer ascribe to the belief that CRPS is without possibility in healing. I’ll not tell people they’ll never get better, and I won’t be sharing the misinformation that advocacy groups expect of me. What I’ll share are the facts that surround this misunderstood syndrome and how we never have to end up disabled, sick, emotional and grieving over something that has a chance early on for an immediate remission, without years of failed treatments and medications and doesn’t ever have to lead to an end of no return.
I think I’ve proven that.
~Twinkle VanFleet, GohlProgram.com 
Advertisements

Power of Pain Gets Ready for September: Pain Awareness Month

POPFNationalPainAwarenessMonthPain Awareness Month is right around the corner.  September is always a busy time for most of us.  These are just a few of the Power of Pain Foundation’s events and activities during that time. Please feel welcome to join in on the events you are able to. We have other’s we are involved with from State to State. We look forward to all that you are doing for the mutual cause we share as well as the hope and fight for a cure we all work so hard for when raising awareness. If you have an event you would like me to share, please feel free to contact me.

I wish you pain eased days and nights, ~Twinkle V.

September is Pain Awareness Month!

PAINWeek 2013

WHEN:
September 4, 2013 – September 7, 2013

WHERE:
Cosmopolitan of Las Vegas
Las Vegas
NV
USA

CONTACT:
PAINWeek 973-415-5100
info@painweek.org
Event website: www.painweek.org

EDUCATION
Lyme MS Neuropathy Pain RSD
Audience: physicians, physician assistants, nurse practitioners, nurses, pharmacists, psychologists, hospitalists, dentists, social workers, and podiatrists

The PAINWeek 2014 Schedule at a Glance is now available! Debuting this year will be two new course formats to broaden the educational experience for our attendees:

Frontline Practitioner Focus will delve into the practice challenges that are particular to provider types and practice settings, including hospitalists, nurses, pharmacists and physician assistants
Clinical Conundrums will present case-based examinations of assessment and diagnosis, and criteria for specialist referral in the pursuit of better treatment outcomes

info@painweek.org

—————————
Chronic Pain Solutions Webinar Series
Online
CONTACT:
Power of Pain Foundation

480-882-1342

Please register for Chronic Pain Solutions on Jul 24, 2013 5:00 PM PDT at:

https://attendee.gotowebinar.com/register/7262827706450704128

Dr. Daniel Twogood, D.C., has been practicing chiropractic medicine in Southern California for 30 years. The doctor will describe 10 steps necessary to lower or eliminate chronic pain. This program does not work for everyone, but is noninvasive and we hope that attendees take away a few good pointers from it. This webinar not a cure, it is a tool to help people manage their chronic pain.

Dr. Twogood will discuss that chronic pain is caused by ongoing inflammation which is caused by specific substances in the diet, food additives & medication. He was also on the blogtalk show Living with Hope, sponsored by the Power of Pain Foundation in May 2013.

Over 100 million Americans suffer with some form of chronic pain such as back pain, fibromyalgia, migraines and arthritis.  His book is easy to read and lists the ten steps necessary to eliminate chronic conditions fibromyalgia, headaches, psoriasis, Crohn’s disease and more, based on this doctors findings over all the years he has been practicing medicine.

Where conventional medicine isn’t always effective, Dr. Daniel reports that relief is available by following these 10 steps outlined in his book. Most patients he works with recover well before 90 days.

After registering, you will receive a confirmation email containing information about joining the webinar.

The Power of Pain does not endorse the presenter or their products. This is being offered as a tool that people in pain and their caregivers can listen to, ask questions, and start a discussion.

——————–
POPF’s P.A.I.N. Summit 2013

WHEN:
September 14, 2013 @ 8:00 am – 4:00 pm

WHERE:
Scottsdale Healthcare Shea Conference Center
9003 East Shea Boulevard
Scottsdale,AZ 85260
USA
COST:
Free

ONLINE and in PERSON

CONTACT:
Power of Pain Foundation info@powerofpain.org

The 7th Annual P.A.I.N. Summit hosted by the Power of Pain Foundation provides a great avenue for pain education for providers, patients and their caregivers. This year’s conference consists of an exhibit area and educational sessions that focus on better diagnosis and treatment options for pain patients, chronic pain issues (as a whole), prescription monitoring programs, and Proper Opioid Management. There will be breakfast, lunch and afternoon snack provided to attendees.

The event will be hosted by Brittany Brannon, Miss Arizona USA 2011, model, and RSD patient. The event will also feature two celebrity speakers, Dr. Natalie Stand, MD winner of the Amazing Race, and WWE star and professional wrestler, Raven.

The day will consist of two sessions.
8am – 1:00pm The morning sessions are focused for healthcare providers. This includes all areas of expertise; anesthesiologists, complementary medicine specialists, emergency room, general practitioners, internal medicine, neurologists, nurses, orthopedics, pharmacists, physiatrists, physician assistants, primary care physicians, psychiatrists, surgeons, and therapists. Any clinician who practices, or is interested in practicing, pain management from an integrative perspective, will benefit from the meeting. HCP’s will be introduced to the rapidly expanding field of diagnosis and treatment. This conference will proved attendees a greater awareness and understanding of the need to appropriately identify, diagnose (HCPs only) and treat/seek treatment of common types of pain, including fibromyalgia, painful diabetic peripheral neuropathy and other chronic pain conditions.
1:30pm – 4:30pm The afternoon sessions will be filled with patients and their family/ caregivers. This portion of the conference will provide attendees a greater awareness and understanding of the need to appropriately identify, and treat/seek treatment of common types of pain.

There is no charge to attend this conference.
Schedule (tentative)
HCP Sessions
8:00 am – 4:00 pm Ongoing Registration Breakfast served Hosted by Brittany Brannon
8:15 am – 9:00 am Keynote address: Preventing complications that arise from diabetes such as peripheral neuropathy (pain)
Dr. Natalie Stand, MD, Amazing Race Winner, USC Pain Clinic
9:10 am – 9:55 am An Integrative Approach to Chronic Pain Dr. Philip Getson, DO, Drexel University, Philadelphia, PA
9:55 am – 10:40 am Cultural Competency and the Patient in Pain Dr. Maged Hamza, Virginia Commonwealth University
Pain Clinic Director, Richmond, VA
10:40 am – 11:20 Evidence Based Chronic Pain Care Linda Watkins, PhD, University of Colorado
11:20 am – 12:00 Complementary Medicine and its role in Chronic Pain Management (TBD)
12:00 pm – 1:00 Open Discussion with the Speakers and Attendees Lunch is served, Exhibitors

Patient/ Caregiver Sessions
1:30 pm – 2:30pm An Integrative Approach to Chronic Pain Dr. Philip Getson, DO, Drexel University, NJ
2:30 pm – 3:15 pm Prescription Drug Monitor program Explained Rob Kronenberg, PharmD
3:15 pm – 4:00pm The Patients Perspective; At Home Pain Coping Skills Raven WWE Wrestler, Barby Ingle Power of Pain
Foundation, and Diane Kennelly AZ Fibromyalgia Group Leader

If you are unable to attend in person, you can attend by watching our UStream Channel
http://www.ustream.tv/channel/power-of-pain-foundation

——————–
AANEM 60th Annual Meeting
WHEN:
September 17, 2013 – September 20, 2013

WHERE:
Montreal
QC
Canada

Event Website- http://www.aanem.org/Home.aspx

American Association of Neuromuscular & Electrodiagnostic Medicine

———————

American Academy of Pain Management

WHEN:
September 26, 2013 – September 29, 2013

WHERE:
JW Marriott Orlando
4040 Central Florida Parkway
Orlando,FL 32837
USA
CONTACT:
209-533-9744

Event Website-

http://www.aapainmanage.org/conference/annual-clinical-meeting/register.html

The American Academy of Pain Management’s 24th Annual Clinical Meeting

Come for the education, the experience, and the pure enjoyment!

Join us at the Academy’s 2013 Annual Meeting, Exploring the Science, Practicing the Art and expand your knowledge and understanding about pain management, meet some of the most forward-thinking experts in the field, gain practical hands-on experiences, and have a great time!

Who Should Attend – Any clinician who practices, or is interested in practicing, pain management from an integrative perspective, will benefit from the meeting.

—————

Institute on Psychiatric Services

WHEN:
October 10, 2013 – October 13, 2013

WHERE:
Philadelphia
PA
USA

Event Website- http://www.psych.org/

—————-

ASA Annual Meeting

WHEN:
October 12, 2013 – October 16, 2013

WHERE:
San Francisco
CA
USA

American Society of Anesthesiologists

847-825-5586

Event Website- http://www.asahq.org/

————————————-

NERVEmber

2013 Scottsdale Headache Symposium

WHEN:
November 13, 2013 – November 17, 2013

WHERE:
Scottsdale
AZ
USA

CONTACT:
American Headache Society
Event Website- http://www.achenet.org

——————-

Comic Pain Relief

WHEN:
November 8, 2013

WHERE:
Chandler Center for the Arts
250 North Arizona Avenue
Chandler,AZ 85225
USA

CONTACT:
Power of Pain Foundation 480-882-1342
info@powerofpain.org

Event Website: http://powerofpain.org/
Comic Pain Relief 2013 presented by the Power of Pain Foundation for NERVEmber. More Info to come!

Comic Pain Relief is a charity show to help raise awareness of chronic pain issues through a great social event using comedy. The event is open the public.

The Comic Pain Relief show will take place to help raise proceeds and support for low income and under-insured patients who are affected by chronic pain conditions such as Post Cancer Neuropathy, MS, Lyme Disease, Diabetic Neuropathy and Reflex Sympathetic Dystrophy.

Neuropathy pain conditions affect people of all ages, and races. There are over 100 million Americans with Chronic Pain.

KenTaylorExecutiveDirectorPowerofPainKen Taylor
Ken is the Executive Director of the Power of Pain Foundation, and an expert on several neuropathy conditions.  Ken@powerofpain.org

 

 

Through Our Motivation For a Cure, We Turn Pain Into Power!  ©powerofpain

P.A.I.N.S. National Pain Management Conference hosted by Power of Pain Foundation

P.A.I.N.Summit

  • Saturday, September 14, 2013

  • 9:00am
  • Scottsdale Healthcare Shea

  • The 7th Annual P.A.I.N. Summit hosted by the Power of Pain Foundation provides a great avenue for pain education for providers, patients and their caregivers. This year’s conference consists of an exhibit area and educational sessions that focus on better diagnosis and treatment options for pain patients, chronic pain issues (as a whole), prescription monitoring programs, and Proper Opioid Management. There will be breakfast, lunch and afternoon snack provided to attendees.

     

    RSVP Required: http://painsummit2013.eventbrite.com/, Limited in-person space.

     

    The event will be hosted by Brittany Brannon, Miss Arizona USA 2011, model, and RSD patient. The event will also feature two celebrity speakers, Dr. Natalie Stand, MD winner of the

    Amazing Race, and WWE star and professional wrestler, Raven.

     

    The day will consist of two sessions.

     

    8am – 1:00pm The morning sessions are focused for healthcare providers. This includes all areas of expertise; anesthesiologists, complementary medicine specialists, emergency room, general practitioners, internal medicine, neurologists, nurses, orthopedics, pharmacists, physiatrists, physician assistants, primary care physicians, psychiatrists, surgeons, and therapists. Any clinician who practices, or is interested in practicing, pain management from an integrative perspective, will benefit from the meeting. HCP’s will be introduced to the rapidly expanding field of diagnosis and treatment. This conference will proved attendees a greater awareness and understanding of the need to appropriately identify, diagnose (HCPs only) and treat/seek treatment of common types of pain, including fibromyalgia, painful diabetic peripheral neuropathy and other chronic pain conditions.

     

    1:30pm – 4:30pm The afternoon sessions will be filled with patients and their family/ caregivers. This portion of the conference will provide attendees a greater awareness and understanding of the need to appropriately identify, and treat/seek treatment of common types of pain.

     

    There is no charge to attend this conference.

     

    Schedule (tentative)

    HCP Sessions

    8:00 am – 4:00 pm Ongoing Registration Breakfast served Hosted by Brittany Brannon

     

    8:15 am – 9:00 am Keynote address: Preventing complications that arise from diabetes such as peripheral neuropathy (pain) Dr. Natalie Stand, MD, Amazing Race Winner, USC Pain Clinic

     

    9:10 am – 9:55 am An Integrative Approach to Chronic Pain Dr. Philip Getson, DO, Drexel University, Philadelphia, PA

     

    9:55 am – 10:40 am Cultural Competency and the Patient in Pain Dr. Maged Hamza, Virginia Commonwealth University Pain Clinic Director, Richmond, VA

     

    10:40 am – 11:20 Evidence Based Chronic Pain Care Linda Watkins, PhD, University of Colorado

     

    11:20 am – 12:00 Complementary Medicine and its role in Chronic Pain Management (TBD)

     

    12:00 pm – 1:00 Open Discussion with the Speakers and Attendees Lunch is served, Exhibitors

     

    Patient/ Caregiver Sessions

    1:30 pm – 2:30pm An Integrative Approach to Chronic Pain Dr. Philip Getson, DO, Drexel University, NJ

     

    2:30 pm – 3:15 pm Prescription Drug Monitor program Explained Rob Kronenberg, PharmD

     

    3:15 pm – 4:00pm The Patients Perspective; At Home Pain Coping Skills Raven WWE Wrestler, Barby Ingle Power of Pain Foundation, and Diane Kennelly AZ Fibromyalgia Group Leader, Dr. Tory McJunkin, Arizona Pain Specialists

     

    If you are unable to attend in person, you can attend by watching our UStream Channel http://www.ustream.tv/channel/power-of-pain-foundation

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

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

Shop for a Cause

Macy’s Shop for a Cause at RSDSA

 

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

~Twinkle V.