WHAT'S NEW IN 2017

 
 

WELCOME TO THE PARC!

 

FACEBOOK: Find PARC on Facebook as RSDCANADA: PARC. Current new and research updates are posted.

HELP WANTED: We are looking for a meeting space for our Edmonton group. If anyone can help please use our Contact Us page. Thanks!

 

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"PAY IT FORWARD PROGRAM "

People donate to help other patients receive phone calls, CRPS materials,

support the HELP LINE and the website costs.

If you want to be part of this program you can help below.

To donate to PARC, please click button below.

 

 

DVD 2013*: PARC PEARL 2017 POCKET CARD SUPPORT GROUP NIAGARA

2017EVENT

WISH LIST

 

 

UPDATES 2017:

 

Thank you to all the courageous patients who promoted awareness of CRPS.

You are all awesome!

 

June 17, 2017: 16 year old Lauren Seabrook's struggle:

http://www.cbc.ca/news/canada/north/yellowknife-teen-lauren-seabrook-1.4165439

 

June 1, 2017. Alicia Ellis is telling her story about CRPS through Alberta Health Services..

https://www.youtube.com/playlist?list=PLi1tOF1I5ZoWY3hfrrwu15NTWz8e9amO

 

May 21: Read about CRPS and the devastating effect it has on Rachel Caplan. 

Global News May 21,2017 by Emanuela Campanella

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May 17, 2017: The FIGHT Project by Lauren Seabrook, a teen with CRPS:

https://youtu.be/xd6AlLmwK10

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Please watch Krista Spence's encouraging video first played at PARC's Nov. 12/16 event:

https://www.youtube.com/watch?v=-12lCBT-EQY

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April 18, 2017: Rachel Caplan Toronto Star:

Toronto Star April 18, 2017


Who else was interviewed? The Executive Director of PARC.

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Please view Yolande Clement's successful battle with CRPS at: 

CRPS: A Success Story

Yolande is also a PARC coach.

 

CRIMSON ROSE FUNDRAISER:

Lynn Langtry, composer and artist, has composed a wonderful song called Crimson Rose. It is available at:

http://lynnlangtry.com/music-store

Lynn says that 50% of sales will go to PARC and the rest to maintain her website.

It is also available on iTunes. Just search by title and her name.

Please visit her site:http://lynnlangtry.com

Thanks Lynn for supporting our charity!

We really appreciate it.

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Restorative Yoga  calms the mind and body. It is poses on the floor and deep breathing.

1. Try Jillian Pransky's Restorative Poses on You Tube. www.youtube.com

2. Rodney Yee's DVD: COMPLETE YOGA for Beginners.  

Out of the 4 practices, the last one is Restorative Yoga which is very effective.

For more please visit: Gaiam

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LDN:LOW DOSE NALTREXONE

Low dose naltrexone has been studied for CRPS and offers hope.

LDN lowers the inflammation levels in CRPS. (Please note that high dose naltrexone is for alcoholics.)

Low dose naltrexone lowers inflammation.

Weinstock,L.MD and Chopra P. MD: Identification and Treatment of New

Inflammatory Triggers for CRPS International Anesthesia Research Society 2015.

(Ask us for a copy.)

 

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INTENSE PAIN SOON AFTER WRIST FRACTURE

STRONGLY PREDICTS WHO WILL DEVELOP CRPS

http://www.jhandtherapy.org/article/S0894-1130(16)30196-X/fulltext

Recent research has found that

1 in 26 with a wrist fracture

can develop into CRPS.

The "red flag is pain greater than 5 out of 10".

Also if the patient has pain more than (or equal to) 5/10

for 3 days after surgery, suspect CRPS.

Early diagnosis is crucial.

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DVD: LIVING A LIFE IN PAIN:

THE STORY OF RSD/CRPS

by Sarah Panas

The film features four CRPS patients, a CRPS doctor,

a psychologist and PARC's Executive Director.

You Tube Trailer:

Living a Life in Pain

 

Cost is $10 plus shipping = $13.50 in Canada

Please ask us about US and International rates.

EMail Us!

 

Major credit cards will be accepted through Paypal.

 


PARC PEARL: 2017

Topics indude:

What is Black Cumin Seed?

TEN Foods to Fight Inflammation: from The Brain Warrior's Way by Dr Daniel C. Amen MD

"CRPS/RSD Will Not Win": A powerful story by Lauren Seabrook (age 16)

Coping Corner: "One idiot a day..." by Helen Small, Exec. Dir.

CRPS Research: "What is the sIL2R Receptor?"

Fascial Stretch Therapy

Narcotic Guidelines: Who is Affected?

The Suicide Disease? What are the facts?

Dr. Harbut's interesting biography.

His in-depth interview will appear on this page soon.

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Why subscribe?

"PAYING IT FORWARD" Program

Your contribution is used to help others with CRPS who have lost their way. Funds support the HELP LINE, send out packages of information, maintain the website and send newsletters to those on a low income. If you have received a package, received a HELP LINE call, or a newsletter, someone with CRPS has donated to help you. 

RESEARCH

The Internet may give you the research on CRPS but it is hard to interpret. When reading a research paper, please ask yourself these questions:

Who authored it and what is their reputation?

Is this paper valid and does it measure what it says it measures?

Is the conclusion valid? Are there any flaws in the data?

In the long run, is this paper important? What does it contribute to the general knowledge of CRPS?

Will this drug or treatment be available? Where? When? For example, neridronate is being hailed by the press as a "breakthrough drug for CRPS" but it is not yet available. The press is stirring up events that have not happened yet.

CRPS is very complicated and hard to research unless the authors completely understand the many  elements of CRPS.

Who is doing what element of CRPS research? There are many lines of research to pursue i.e. inflammation, blood flow, nerve damage and brain issues. The hot new research line is the immune system factors and brain issues.

Our newsletter draws the big picture for you and brings together all the elements of CRPS research and important conclusions. We are very well connected with several excellent researchers.

Besides, your support is very much appreciated!

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MEMBERSHIP OPTIONS

COMING Soon!  A PARC FORUM is coming!

OPTION 1: Deluxe membership ($35 per year) includes  3 issues per year, PARC Alert, Ongoing Support and CRPS  Self Management Program  You are helping another CRPS patient get the help he/she needs and benefitting from our excellent services as well.When ready, the PARC Forum: PARC PLACE, will be at no extra cost.

OPTION 2: Newsletter only: ($25 per year) .The newsletter is published 3 times per year.

These memberships are tax deductible and a tax receipt will be issued.

To receive your issue of the newsletter or join as a member of our Canada wide network:

  • OPTION 2: To purchase the newsletter or membership please use our secure online system.

    Major credit cards are accepted through Paypal. (You do no need a Paypal account to donate.)

  • OPTION 3: For those who simply wish to donate, please use Canada Helps. Major credit cards are accepted.

 


WHAT'S IN YOUR WALLET?

 

PARC pocket card
 

This card is the size of a credit card easily stored in a purse, wallet or pocket.

 

DO YOU HAVE BURNING PAIN?

HAS IT LASTED LONGER THAN THE EXPECTED HEALING TIME?

WHEN TO SUSPECT CRPS...

INSIDE TEXT: Signs and symptoms of CRPS.

 

PROFESSIONALS: Do you have patients recently diagnosed? Do you need cards for your patients, nurses, hospital or clinic staff?

This sleek 4"x 3 3/8"pocket card has concise CRPS information.

PATIENTS: Are you tired of explaining what RSD/CRPS is? Do your family and friends understand? Does your doctor know about it? Does the ER staff, specialist, local hospital, nurse,or physiotherapist know?

Now there is no need to explain--let the Pocket Card do it for you. Why not keep one in your wallet?

 

Q: HOW CAN I GET A FREE CARD?

A: Sign up as a new member with PARC. Please send your mailing address and membership fee ($35 CDN ) deluxe membership or $25 CDN (for newsletter only ) to the address below. (US and International rates available on request.)

Q: WHAT IF I ONLY WANT CARDS ?

A: To receive a quantity of cards, please tell us how many you wish and include a donation ($1 per card) inside a self-addressed envelope sent to our mailing address:

PARC POCKET CARD

c/o PARC PO BOX 21026

ST. CATHARINES, ONTARIO

CANADA L2M 7X2

 

OPTION 2 : To order Pocket Cards, online transactions through Paypal.

Proceeds go to our "Pay It Forward", Seminars and" Education Programs" for 2017.

 

 

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CHRONIC PAIN

SUPPORT GROUP OF NIAGARA(CPSN)

MEETS Second WEDNESDAY OF THE MONTH

DAY/TIME: 1:30 PM

Location TBA.

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For further information:

please contact Will Noiles: CONTACT

If coming from out of town, please verify meeting date in advance.

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PARC'S WISH LIST

Please read this list and if you can help in any way, we would be very appreciative.

  • volunteers for our new PARC Forum: three people with experience or enthusiasm
  • sponsors for our 2017 CRPS self-managment program for patients
  • volunteers to start support groups (support group kit)
  • volunteers to be a CRPS Coach(Ask us.)
  • volunter to help with newsletter editing: computer skills are necessary
  • office supplies, gift cards for Staples
  • sponsors for events

EMail Us!

 


 

ORIGINAL STAINED GLASS ART CARDS!

WATER (Design 2 of 8)

 

OR DESIGN Glassworks has utilized breathtaking colors and brilliant textures of stained glass for the luminous glass art that they create. These radiant cards are awesome photos of the art glass that Pam and Oded Ravek have so lovingly created. This set of 8 original cards are blank and suitable for any occasion.

 

MORE STAINED GLASS ART CARDS

 
 

(Design 3 of 8)

 

OPTION 1: To download an order form, click here:

DVD/CARD FORM

 

OPTION 2:

We are accepting online payment.

Major credit cards are accepted.


 We leave this article on tihs page because it fully explains the elements of CRPS, treatments and medications.

It is written by a well known doctor who treats CRPS: Dr. David L. Shulman.

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CRPS " The Mystery Disease"

 

Matt is a 46 year old right handed carpenter. While cutting wood the saw jumped and lacerated his left hand resulting in multiple tendon lacerations but no fracture. The pain was initially described as tearing, but after he underwent tendon repair and subsequent splinting for 3 weeks, he described the pain as, "Like my hand was in a pot of boiling water" and, "Like a thousand needles" and, "Like I'm grabbing a wire brush". His left hand took on a reddish blue appearance and was swollen and very sensitive to light touch, which could precipitate a volley of "electrical shocks". The pain spread up the forearm and also affected his shoulder but spared his elbow. He was unable to use his left hand for anything and had to protect his left hand with his right hand if he went out in a crowd. He was unable to work and had to give up his music and his sports. Sleep became sporadic and non-restorative since he would awaken frequently with sudden pain in his left upper limb. He had become quite depressed as a result of the unrelenting pain and the sudden deterioration of his circumstances. I saw him six months after his injury and he already had a cold, pale, wasted left upper extremity. He had marked allodynia which is pain elicited by light touch. He had a well-healed palmer surgical scar but the tendons distal to the scar were thickened and functionless. The fingers were fixed in a flexion contracture. There was robust hair growth of the forearm and dorsum of the hand. His nails were long and deformed since he could not tolerate attempts to trim them. However he had a normal radial pulse and immediate capillary refill to his nail beds.

Matt was first treated with Vioxx without improvement and was stopped. He was given Gabapentin which helped only a little and this was switched to Topamax with improvement. He started M-Eslon but as time went on it became less effective and he was switched to Hydromorphone 2 mg tid and Methadone for pain, 10 mg tid. For sleep he was given Cesamet 1 mg hs and for his low mood Cymbalta 60 mg qam. Three intra-venous regional Bretylium blocks were administered with improvement for only a few days at a time.

Matt's diagnosis is Complex Regional Pain Syndrome type 1 (CRPS 1) following soft tissue injury to his left hand.

Chronic, neuropathic type pain in an extremity was described as far back as the Trojan War. Sophocles play Philoctetes describes a soldier with pain like, "the lightning bolts of Jove." in his leg after a war wound. The modern description of CRPS was by a physician, Silas Weir Mitchell, who described soldiers from the American Civil War who developed neuropathic pain in their wounded extremities. He termed this agonizing pain "causalgia" and noted it was caused by direct damage to a peripheral nerve which triggered autonomic and dystrophic changes in the extremity. Causalgia is now termed CRPS type 2(1). A similar neuropathic pain syndrome with autonomic and dystrophic signs triggered by soft tissue injury or bone fracture without direct nerve injury was described in 1947 and was termed Reflex Sympathetic Dystrophy (RSD). We now refer to RSD as CRPS type 2. In this article I will describe both type 1 and type 2 CRPS together as CRPS.

CRPS is a disabling chronic pain condition of unknown etiology. (We do not know the cause.)

What distinguishes CRPS from other chronic painful conditions of a limb, is the hallmark autonomic instability and rapid onset of dystrophic changes. There is usually a history of trauma which seems to precipitate the pain. The most common precipitating event is a limb fracture, usually the wrist, treated with a cast. However many other injuries could trigger CRPS (Table 1).

Table 1

Possible triggers of CRPS

Trauma
Penetrating wounds
Lacerations
Abrasions
Venipuncture
Intramuscular injection of medication or illicit drugs
Gunshot wounds
Crush injuries and blunt trauma
Neck or shoulder injuries
Acute traumatic carpal tunnel syndrome
Sprain, fracture, or dislocation
Post-surgery
Carpal tunnel release
Fracture repair (Colles fracture)
Post-arthroscopy
Prolonged immobilization
Local disease
Nerve compression syndromes
Osteomyelitis
Tissue ischemia
Tenosynovitis
Systemic disease
Myocardial infarction
Stroke
Pancoast tumor
Herpes zoster

Possible Signs and Symptoms

The patient may complain of pain long after the healing of the injury and the character of the pain may gradually change from a post-fracture nociceptive type pain description of dull, pressure, throbbing and aching to a neuropathic type of pain, with terms such as burning, shooting, sharp, tingling, searing, cutting, tearing, lancinating, shocking and others. The pain may spread to involve the entire limb and may spread even further to involve the trunk on the side of the original injury. The patient fears using the limb and often avoids even light touch to the skin which may feel painful, a phenomenon known as "allodynia". The patient may observe that the affected limb feels hotter or colder than the unaffected limb and that the skin appears a different colour, either pale or alternatively dark red or purple or blue. There may be sweating and increased or decreased hair and nail growth of the affected limb. In time the tissues of the affected limb become dystrophic or wasted and this includes the muscles and subcutaneous tissue and the bones become osteopenic. The skin becomes thin and in conjunction with dermal oedema the skin takes on a stretched, shiny appearance. The skin may appear blue, cold and clammy, similar to the appearance of a limb in shock. The neuropathic pain sometimes manifests as pruritis and a neurodermatitis often results.

In advanced CRPS there may be a movement disorder of the affected limb with muscle weakness, paresis, dystonia, tremor or myoclonic jerks described in association with CRPS. The joints may undergo contracture and become fixed in partial flexion and the limb may become withered and useless. Other sequelae of CRPS may be visceral such as neurogenic bladder or gastroparesis.

The patient may be observed constantly protecting the affected limb so that it is not inadvertently touched by clothing or by passersby or even subjected to a wind since all these stimuli result in severe pain. In advanced cases the patient may become reclusive and isolated since all movement and touch are painful and the fear of provoking pain is greater than the need to participate in social situations. It is no wonder that these patients are labeled with social phobia or other psychiatric diagnoses.

Fortunately most patients have a milder form of the disease and do not progress to this horrific outcome. We no longer believe that patients progress inexorably through various stages of CRPS but that each patient develops certain characteristics of the disease that is unique to him/her. Thus some patients may have prominent sudomotor changes (sweating) and others no sweating but marked vasomotor changes and still others may rapidly develop dystrophic changes.

Update 2017: There are four types of CRPS: acute, chronic, warm and cold.

Vasomotor phenomena may be transient and therefore patient reports of changes in colour and temperature must be accepted even if these changes are not present at the time of the clinical examination. The diagnostic criteria of the International Association for the Study of Pain (IASP) in 1994 for CRPS takes this variability into account (table 2).

Table 2.

IASP definition of CRPS

Pain disproportionate to inciting event (sometimes  major pain from minor injury)

Associated at some point with symptoms in at least three categories and signs in at least two categories of:

allodynia, hyperalgesia (pain)

changes in skin colour, temperature

edema, sweating

decreased joint range of motion, motor dysfunction, trophic changes (hair nail skin)

Absence of any other condition that would otherwise account for the degree of pain and dysfunction

Diagnosis

There are no laboratory or imaging tests that will reliably pinpoint the diagnosis of CRPS. The commonly ordered 3 phase bone scan may show delayed uptake of the radioactive tracer in approximately 50% of cases and so this is a test with poor sensitivity. (It only finds blood issues 50% of the time.) The main criteria is the Budapest Criteria listed on our "What is RSD/CRPS? page." Therefore, the diagnosis remains clinical and is often not made on the first visit but only after careful follow up.

Treatment

A good diet, exercise, physical and occupational therapy, and an overall healthier lifestyle all play a positive role in improving the patient's health. Cessation of smoking may be particularly helpful.

Initial therapy is directed at enabling physical therapy and rehabilitation and pain control is essential for this. Pain control will allow the patient to sleep better and will reduce fear and anxiety. The best way to achieve early and effective pain control is through pharmacotherapy.

Pharmacotherapy of CRPS should be considered according to the Canadian Guidelines for neuropathic pain (table 3)(2 )

Table 3.

TCA Pregabalin or Gabapentin

SNRI Topical Lidocaine

Tramadol or CR Opioid Analgesic

 

Fourth Line Agents

If the patient fails the medications in this algorithm he/she should probably be referred to a specialist who may consider using oral corticosteroids, bisphosphonates, photon therapy, DMSO 50% cream and N-Acetylcysteine (3). Intravenous regional Bretylium and Ketanserin have been shown to improve pain control.(3). Surgical sympathectomy and spinal cord stimulators are effective over the long term but are expensive therapies not readily accessible. Amputation is not recommended even though many patients may request it.

Once pain control is established the patient should be referred as soon as possible for physiotherapy and occupational therapy, which are the mainstays of treatment. Physiotherapy if instituted early enough can reduce the pain and vasomotor symptoms and may prevent the soft tissue and joint contractures.

The newest and most exciting therapy for refractory CRPS is the Ketamine infusion. The usual protocol is a four-hour infusion of up to 250 mg on each day of a consecutive 10 day course. The results in one study (4) were impressive with 7 of 12 patients experiencing complete pain relief for 1 year or more. Four patients remained pain free for >3 years after their second infusion.

Psychological and family support for the patient is essential. I send all my CRPS patients to PARC (5), a patient counseling, support and advocacy group based in St. Catharines. PARC holds meetings and sends out a newsletter with valuable information and provides a wallet card which explains the essentials of CRPS.

Recently studies have shown that it may be possible to prevent CRPS in the case of wrist fractures. It is likely that oral administration of 500 mg of vitamin C per day for 50 days from the date of the injury reduces the incidence of CRPS-1 in patients with wrist fractures. (2.)

Matt has tried the medications in the neuropathic pain protocol and some advanced therapies as well. He is the process of referral for Ketamine infusion.

 

1. Merskey H & Bogduk N Classification of chronic pain: descriptions of chronic pain syndromes and definition of terms. 2nd edition Seattle: IASP Press, 1994 with modifications of the Budapest consensus group 2004

2. Pharmacological management of chronic neuropathic pain ? consensus statement and Guidelines from the Canadian Pain Society. Moulton et al Pain Res Manag 2007; 12(1), 13 - 21

3. Evidence based guidelines for complex regional pain syndrome type Perez et al. BMC Neurology 2010, 10:20

http://www.biomedcentral.com/1471-2377/10/20

4. Subanesthetic ketamine infusion therapy: a retrospective analysis of a novel therapeutic approach to complex regional pain syndrome. Correll GE, Maleki J, Gracely EJ, Muir JJ, Harbut RE. Pain Med. 2004 ep;5(3):263-75
5. Promoting Awareness of RSD/CRPS (PARC). Contact www.rsdcanada.org

posted with permission from the Parkhurst Exchange ©2011

by David Shulman MD FCFP CCFP DAAPM

We thank Dr. Shulman for this article and the many contributions he has made to PARC.

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