CRPS Awareness

November is just a week away.  In addition to my daily facts/fiction related to CRPS, my non-profit CRPS Partners In Pain, Inc. is holding an Awareness Symposium on November 16, 2013 at Drexel University New College Building, Philadelphia PA

The presenters are:

Dr Pradeep Chopra, MD

Dr Chopra is a professor at Brown Medical School in addition to being director of a pain management center in RI

Dr Guillermo (Bill) Alexander, PhD

Dr Alexander worked closely with Dr Robert J Schwartzman for years developing clinical trials and research.  He is a professor at Drexel Medical School.

Nancy Renée Cotterman, RN

Nancy has had CRPS for over 17 years, has published a book on CRPS called CRPS Facts, Fiction and Feelings and is a CRPS advocate

Jess Feinberg

Jess is a CRPS patient who has been in remission for 16 months.  She is back in school and studying to be a social worker.

Shirley Shea

Shirley's daughter Kaitlyn has had CRPS for 17 years.  Shirley will speak about the care taker role and the affect of CRPS on the family.

To Register go to:  www.crpspartnersinpain.com and click on Symposium.  Registration is $25

November 17th Meet and Greet

Sunday, we will be having a meet and greet fundraiser at Not Just Sandwiches in Warminster PA.  A portion of the proceeds will go to CRPS Partners In Pain, Inc.  We will also be raffling baskets and a Kindle Fire.

This is CRPS Partners In Pain, Inc's way of sharing CRPS Awareness.  I hope that you will join us.

CRPS Awareness

Yesterday, October 22, 2013 the TV show The Doctors did a segment on RSD.  Overall it was a good piece for what it was, but it could have been so much more.  The person highlighted in the piece has had CRPS for 10 years but for the most part was untreated.  This we all know is not unusual.  They explained how CRPS can spread which was good.  They implied by changing her diet to a non-inflammatory diet would get rid of her symptoms.  HBOT was offered for wounds that were not healing due to the extreme edema.  A prominent LA physician who treats CRPS was briefly shown.  He spoke about the importance of a multi-disaplined approach, which was good but he did not lay out all of the treatment options such as ketamine or lidocain infusions. I know that he treats with Ketamine so I wonder why it was not even mentioned.

Purely as an awareness piece introducing the general public about CRPS it was ok.  I would love to see them do a follow up piece with someone who as a patient, is more knowledgable about the treatment options.

November is CRPS/RSD Awareness Month

I will not be able to be on line for the first week of CRPS/RSD Awareness Month; there for, I will be posting 7 CRPS Facts or Fiction for the next 7 days both here and on Facebook.

1.  Fact or Fiction?
CRPS/RSD can not spread beyond the injured limb

Fiction.  Although many physicians are not aware that CRPS/RSD can spread in the limb on the other side or up one side; it can.  The internal organs can also be affected such as the GI Tract, vision and hearing.  If you are told by a medical professional that CRPS/RSD is either
1. all in your head
2. not able to spread
3. will burn itself out

Find another physician as CRPS is a physical illness that can lead to depression.  It is the physical injury that comes first not the depression.

CRPS does spread and I have never seen it burn itself out.

October is: National Breast Cancer Awareness Month, and Domestic Violence Awareness Month

Two members of my family have had breast cancer as well as several of my friends.  Those of us with CRPS tend to ignore routine preventive testing for fear of causing a flare.  It is true that a mammogram may be painful for some; however there are other things that you can do to be sure that if you have breast cancer, it will be caught early.
1) Self exams monthly are essential.
2) Did you know that a breast ultrasound can be done in place of a mammogram?  This is a great alternative for those of us with CRPS.
3) GYN exams are also important.

If caught early, a lumpectomy may be all that is needed for treatment.  This can be done under ketamine to reduce the incidence of CRPS spread.

Breast cancer is something that is not in our control, much like our CRPS; however domestic abuse is something that we can prevent or at least get away from.  Because most of us are financially dependent on someone else, we feel that it is ok to be verbally abused.  Yes verbal abuse is abuse.  There are so many other options for those who are abused.  If you are involved in an abusive relationship, please contact a health care professional and let them help you find a way out.

November Is RSD Awareness Month!!

November is National RSD/CRPS Awareness Month.  Although I try to raise awareness all year long, this is our big push every November.

I am the Executive Director of CRPS Partners In Pain, Inc (www.crpspartnersinpain.com)  November 16 and 17 we are having awareness events both educational and social events

Day 1

RSD/CRPS is a neurological chronic pain syndrome that strikes the young, the old, men and women.  Sufferers are seeking medical care in a system that doesn’t really understand the disease.

The purpose of this symposium is to cover the facts of CRPS, where research is headed and hear from a patient, and an author who has written about CRPS.

WHEN:  November 16^TH, 2013

WHERE: Drexel University’s New College Building

COST;     $25 registration

FOR MORE INFORMATION:  www.crpspartnersinpain.com 

TO REGISTER

SPEAKERS INCLUDE: Dr Pradeep Chopra, MD

  Dr Guillermo Alexander, PhD

  Nancy Renée Cotterman, Author and Advocate

Please share this information with friends, family members and your health care professionals.

Day 2

Not Just Sandwiches in Warminster PA is not only allowing us to take over their restaurant but they are donating a portion of their sales on November 17, 2013 to Partners In Pain, Inc.

CRPS Partners In Pain, Inc will have awareness items such as T-Shirts, jewelry and raffle items.  You will have the chance to meet and talk to others with CRPS.  Believe me when I say that nothing compares to sitting in person and talking to a fellow RSDer. 

So, what can you do to promote National RSD/CRPS Awareness Day?

• I have a bracelet that is orange and has CRPS Awareness on it (we will be giving bracelets to everyone who registers for the symposium).  I am asked all of the time what it represents.  I whip out my handy brochure on CRPS and give them a brief education on it.
• Drop off brochures at your pain management physician's office, PCP's office, etc so that others will read it while waiting in the doctor's waiting room.

Theses are just two ideas.  I'm sure that you can think of some more.  Please share them with us.

New Writing Project

I worked as a pediatric nurse from 1991 to 2001.  People always ask me how I could work with children.  To me it is the best nursing job that there is.  We all have our own niche and mine was pediatrics.

After talking with Dr Pradeep Chopra, MD I realized that the pediatric population is under served when it comes to pain diagnosis and pain management.

I am looking for children - teens who have chronic pain.  What are their diagnosis?  How do they feel that they are treated?  Does the medical profession believe that they are in pain?  How does it affect their schooling?  Their families?

I would like to have some children - teens write about their experiences and share them with me.  With their parents' permission I would like to incorporate it into my book.  I would also like to hear from their siblings and parents on how they feel seeing their sibling/child in pain.  What helps them?

Please send these stories to rsdadvocate@yahoo.com
I will email you a release.
In addition to stories, photos of the affected parts of the body would also be appreciated.

NOVEMBER IS NATIONAL RSD AWARENESS MONTH

NOVEMBER IS NATIONAL RSD/CRPS AWARENESS MONTH 

CRPS PARTNERS IN PAIN, INC

IS

PROUD TO PRESENT 

RSD/CRPS AWARENESS MONTH SYMPOSIUM

RSD/CRPS is a neurological chronic pain syndrome that strikes the young, the old, men and women.  Sufferers are seeking medical care in a system that doesn’t really understand the disease.

The purpose of this symposium is to cover the facts of CRPS, where research is headed and hear from a patient, and an author who has written about CRPS.

WHEN:  November 16^TH, 2013

WHERE: Drexel University’s New College Building

COST;     $25 registration

FOR MORE INFORMATION:  www.crpspartnersinpain.com 

TO REGISTER

SPEAKERS INCLUDE: 

Dr Pradeep Chopra, MD

 Dr Guillermo Alexander, PhD

Nancy Renée Cotterman, Author and CRPS Advocate

Jess Feinberg, patient

NOVEMBER IS NATIONAL RSD/CRPS AWARENESS MONTH 

CRPS PARTNERS IN PAIN, INC

IS

PROUD TO PRESENT 

A MEET AND GREET FUNDRAISER

WHEN:  November 17^TH, 2013

WHERE: Not Just Sandwiches in Warminster PA

Fundraiser:     Not Just Sandwiches is donating a portion of the sales to CRPS Partners In Pain, Inc.  We will also have a raffle and RSD Awareness items for sale

FOR MORE INFORMATION:  www.crpspartnersinpain.com 

TO REGISTER

RSVP To:  rsdadvocate@yahoo.com

NOVEMBER IS NATIONAL RSD AWARENESS MONTH

NOVEMBER IS NATIONAL RSD/CRPS AWARENESS MONTH 

CRPS PARTNERS IN PAIN, INC

IS

PROUD TO PRESENT 

RSD/CRPS AWARENESS MONTH SYMPOSIUM

RSD/CRPS is a neurological chronic pain syndrome that strikes the young, the old, men and women.  Sufferers are seeking medical care in a system that doesn’t really understand the disease.

The purpose of this symposium is to cover the facts of CRPS, where research is headed and hear from a patient, and an author who has written about CRPS.

WHEN:  November 16^TH, 2013

WHERE: Drexel University’s New College Building

COST;     $25 registration

FOR MORE INFORMATION:  www.crpspartnersinpain.com 

TO REGISTER

SPEAKERS INCLUDE: 

Dr Pradeep Chopra, MD   

Dr Guillermo Alexander, PhD

Nancy Renée Cotterman, Author

Jess Feinberg, patient