PARC: Promoting Awareness of RSD and CRPS in Canada

"CRPS (RSD) is not a walk in the P.A.R.C!"

PO Box 20032, St. Catharines, Ontario, Canada L2M 7W7

Our mission is to support, educate and inform persons with Complex Regional Pain Syndrome (CRPS) (formerly known as Reflex Sympathetic Dystrophy, RSD), the community and the medical professionals treating CRPS, about the importance of early diagnosis and treatment. The suffering of persons with this disease must also be recognized.

INTRODUCTION TO RSD/CRPS

In 1994, the name Reflex Sympathetic Dystrophy (RSD) was changed by the medical community to Complex Regional Pain Syndrome (CRPS). The aim was to better reflect the nature of the disease and to unify the 30 or so confusing terms into one appropriate label for worldwide research purposes. Most doctors use the term CRPS but patients and families still use the familiar term RSD; we will use both terms.

GENERAL FACTS AND FIGURES

There have not been any large scale epidemiological studies conducted in Canada or USA to date to give us an exact incidence of CRPS.

Figures from The Netherlands indicate the incidence of C RPS based on the medical records of over 900,000 Dutch patients which found that CRPS occurs 26.2 in 100,000 patients or approximately 1 in 4,000. In England, the incidence of CRPS is estimated as 1 in 2,000.

Based on the Canadian population and Dutch statistics, Canada will have nearly 10,000 new cases of CRPS each year. In Ontario, the number will be over 4,000 each year because nearly 50% of new cases will be found in Ontario.

According to PARC's survey only 40% will be diagnosed in the first three months when the recovery rate is 80-90%. In addition, 66% see 3 or more doctors before being diagnosed.

Surprisingly in USA, "Fifty percent of cases go undiagnosed", reports Robert Schwartzman, MD, leading American retired neurologist and RSD/CRPS expert researcher. (Note: Dr. R. J. Schwartzman recently passed way. Our condolences to his family.)

What about Canada? Latest figures from Nova Scotia's Northside General Pain Clinic indicate that:

"1 in 60 has a lifetime risk of getting RSD/CRPS."
That is, over the course of a lifetime, 1 person in 60 can expect to contract this disease.
A women is three to four times more likely to develop RSD/CRPS than a man. Women 40-60 years of age are mostly affected.
The upper extremities are two times as likely to be affected as lower extremities. (See Eur J Trauma 2001:27:99-103 )
Children are also affected and the numbers are on the rise. Children generally have a better prognosis than adults.
For a further explanation, please see the WHAT IS RSD/CRPS? page or use our contact form: EMail Us!

HOW DO YOU MEASURE PAIN?

Using the McGill Pain Index, many diseases are rated out of 50 on this index.

"Causalgia means "burning pain", another name for CRPS.

The score for cancer pain is 28 and for CRPS (causalgia) pain, a whopping 42.

**McGill Pain Scale**

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TWO WORDS of the UTMOST IMPORTANCE in CRPS:

"EARLY DIAGNOSIS"

It is important that all patients be diagnosed early and treated early. If not, as a result, many patients do not receive the proper treatment in a timely manner and they suffer needlessly. Why does this happen? It happens because doctors are not able to recognize the signs and symptoms unless they know the Budapest criteria. CRPS can mimic other diseases and it takes an expert to diagnose it.

Every doctor should have a copy. If you are an informed health care worker or a patient, please give your doctor a copy of the (Budapest Criteria).

Early diagnosis goes hand in hand with knowing the Budapest criteria. How do you correctly diagnose CRPS from 24 other diseases? Please read Dr. Shulman's article "CRPS Look-Alikes" in the June 2021 issue. WHAT'S NEW?

AWARENESS URGENTLY NEEDED

Due to an enormous lack of education about recognition of symptoms, diagnosis, treatment and management of RSD/CRPS, it is not well recognized in the Canadian medical field. Many doctors have never heard of RSD/CRPS or the diagnostic criteria (Budapest Criteria). Without accurate information, RSD/CRPS is quite often misdiagnosed, diagnosed too late, or no one believes the patient's pain. Many are told it is "all in their head ".

Let us clarify this last statement: the consequences of CRPS is felt in the brain. Research has shown that CRPS is not a psychological illness but due to the "danger signals" entering the brain from the body, patients suffer and parts of the brain cause various symptoms. More information from: Moseley, L. PhD and David Butler Explain Pain www.noigroup.com. WHAT'S NEW?

HOW CAN I HELP PROMOTE CRPS AWARENESS?

You can help us promote awareness by ordering orange CRPS Awareness Bracelets!

The bracelet text reads "RSD/CRPS Awareness" and "P.A.R.C. www.rsdcanada.org".

1. Contact your local newspaper and tell your story.

2. Wear orange in November 7 with your bracelet.

3. Turn a building orange for Awareness day i.e. a local landmark, city hall,

4. Hand out PARC flyers.(Hospitals,medical clinics, PT clinics.)

Thank you for your support.

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OUR MISSION

DO YOU WISH TO CONTRIBUTE TO PARC'S MISSION AND GOALS?: Do you wish to help further PARC's mission of informing everyone about the utmost importance of early diagnosis and treatment?

PARC's goals are:

promoting greater awareness of CRPS/RSD

providing encouragement and support for patients

holding seminars/events to further establish our mission of early diagnosis

raising funds for CRPS research

PARC is a registered charitable organization. Please note that contributions of $20 and over are tax deductible.

Please note that all funds donated to PARC will remain in Canada and beneft only Canadians.

Funds are directed to awareness, education and research and special projects.

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EARLY DIAGNOSIS IS ESSENTIAL: GETTING HELP

Thought for the day:

“Whatever loss, pain or tragedy

you have experienced,

you can get through.”

I have been diagnosed with CRPS. Now what?

Please take the time to read through our site. It was specifically designed with the patient and professional in mind.

Early diagnosis in the first 0-6 months is critical.

Please check the Budapest criteria. ( Budapest Criteria).

After reading about RSD/CRPS, if you suspect that someone may have this disease,

it is essential that he/she does not delay in finding an expert for prompt medical treatment.

Contact us.

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WORKING TOGETHER

WHEN FACING CHRONIC PAIN

The book launch was held in Montreal. It is an extensive Canadian resource book edited by Odon Productions (Les Productions Odon),.

It is about various pain conditions, treatments, and uplifting stories from pain patients. Moreover, it is:

"This work is also intended for all health care professionals

who want to learn more about the issues

and aspects specific to chronic pain

and benefit from the experiences of their colleagues."

Pain conditions are written by doctors and health care professionals. Each testimonial shows how the chronic pain patient is living a life despite the pain.

There are several chapters on CRPS including "Living with CRPS", "PARC" and a testimonial by the Executive Director of PARC,

TOGETHER WE CAN MAKE A DIFFERENCE!

Do you wish to help us make a difference in the war on CRPS/RSD?

We appreciate every contribution whether it is monetary or not.

There are many ways you can promote awareness where you live. Spread the word with PARC's help.

Monetary contributions are tax deductible. To donate and for some ideas, see the DONATIONS page.

PARC is a registered charity which is able to issue tax receipts for donations over $20.

We are listed on the Paypal Giving Fund page.

CLICK HERE TO MAKE DONATION GO FURTHER

EMail Us!

(Last updated October 26, 2022.)