WHAT'S NEW IN 2014


WELCOME TO THE PARC!

PARC NEWS

  • As of June 11, 2014 we have added new items throughout our site. We update frequently.
  • Find PARC on Facebook as RSDCANADA: PARC
  • Stained Glass Art Cards, 8 unique designs.View more...
  • To donate, purchase or renew memberships, please click button below.

 

 

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

2014EVENT

WISH LIST

 

 

 

PARC SPONSORS LOCAL STUDY

AT HAMILTON GENERAL HOSPITAL 2012-3

PARC is sponsoring its first local study in Hamilton.This study is now recruiting patients at Hamilton General. Anyone in Canada living with CRPS can take part. You do not have to leave home to participate. Interviews are done by phone or Skype. Here is your chance to help us find a cure!

Hamilton Study Information

Feb. 25 Update: This study has been completed. We thank all patients who took part.


 

DVD: LIVING A LIFE IN PAIN:

THE STORY OF RSD/CRPS

by Sarah Panas

The film traces four CRPS patients, a CRPS doctor,

a psychologist and PARC's Executive Director.

You Tube Trailer:

Living a Life in Pain

The DVD will be out in 2014.

Cost is $10 plus shipping = $12.25 in Canada

Please ask about US or International rates.

Please leave your name and e-mail with us. We will inform you when the DVD is ready to ship.

CONTACT US AT PARC.

 

Major credit cards will be accepted through Paypal once the DVD is available.


PARC PEARL: SUMMER 2014

 

  • Unmderstanding CRPS
  • Staying Safe by Chris Harper B Pharm.
  • Marilyn Brown: My Story
  • Just Hit Play
  • Book Review, Tips
  • In Memoriam Dr. G.Rhydderch

NEWSLETTER OPTIONS

OPTION 1: Deluxe membership (quarterly newsletter, PARC Alert, Survivor Club, Ongoing Support and Self Management Program) in PARC is available. At no additional cost, we have just added the Legal Consult. Total cost for these 6 services is only $35 per year.

This membership is tax deductible and a tax receipt will be issued

OPTION 2: Newsletter only: $25 per year.Newsletter is published 3 times per year. This is also tax deductible.

To receive your issue of the newsletter:

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

    Major credit cards are accepted through Paypal.


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 RSD/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 RSD/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 and carry extras to educate your doctors?

 

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 or USD for deluxe membership) or $25 CDN or USD ( for newsletter only ) to the address below. (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 ($2 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 Education Programs for 2014.

 


STAY TUNED for Fall 2014

 

_________________________________________________________________

 

CHRONIC PAIN

SUPPORT GROUP OF NIAGARA(CPSN)

MEETS FIRST WEDNESAY OF THE MONTH

DAY/TIME: 1:30 PM

COMMUNITY ROOM

479 B Carlton Street, St. Catharines.

Please contact CPSN Chair below.

 

2014 MEETING SCHEDULE:

March : Gatekeepers

April: Chris Harper ,Pharmacist

May: TBA

June: PIcinc

 

For further information contact CPSN Chair: WILLY NOILES

 


PARC'S WISH LIST 2014

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

  • sponsor for toll free 800 number in Canada for our HELP LINE
  • sponsors for our education programs across Canada
  • volunteers to start support groups (support group kit provided)
  • volunteer speakers on CRPS (Power Point provided)
  • person(s) with fundraising experience,
  • office supplies (contact PARC for list)
  • gift cards (contact us)

CONTACT US AT PARC.

 


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.

Help support PARC's programs for 2013.

 

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.


PAGEANT CONESTANT IN CONSTANT PAIN:Ashley MacDonald

January 28, 2012 The Inquirer: Amanda Davidson

She still flashes the smile of a pageant contestant, despite the pain she’s endured the past year. At times it overwhelms her, brings her to tears, crushes her spirit.

“I wake up sometimes and I’m just not able to get out of bed at all,” Ashley Marie MacDonald says in the Clermont County townhouse she shares with her parents.

Pain starts in her right foot and radiates up to her thigh. “It burns, it swells, it feels absolutely ice cold, it stabs,” she says.

“I wouldn’t wish it on my worst enemy.”

She says she takes nerve pills, an anti-depressant, vitamins and the narcotic pain reliever Vicodin. On her worst days, morphine provides relief.

“I try so hard to remain positive,” she says, “but there are days I don’t want to deal with it.”

At 23 years old, there is no cure for what ails her.

It began Jan. 5 of last year with what seemed at the time like a relatively minor injury.

MacDonald says she was checking stock at the office-supply store where she worked. She leaned a tall bookcase over to scan its bar code. The bookcase fell on her right foot.

“I really wasn’t in a whole lot of pain,” she says. “It didn’t feel like it would be a major issue.”

She tried to walk it off. But within a half hour, her foot was badly swollen and bruised. She called her mother, who took her to an emergency room.

At first, she was told she had a broken bone. Later, a different doctor said there was nothing wrong with her. With her pain worsening, she was referred to an orthopedic specialist who eight weeks after the injury diagnosed a condition MacDonald had never heard of: complex regional pain syndrome, or CRPS, previously known as reflex sympathetic dystrophy.

Doctors aren’t sure what causes the chronic pain condition, which can affect any body part, most often the arms or legs. After pain is triggered by a traumatic event, the body’s nervous system becomes hyperactive and continues sending pain signals to the brain.

It’s unclear how many people have it; the number of U.S. sufferers has been estimated at 1.5 million to 3 million.

“Like any disease, there are variations and it can be different from person to person,” says Dr. Sung Min, an interventional pain specialist in Green Township. He has treated MacDonald since August.

“It can be horrible pain,” he says. “A lot of people have likened it to putting a candle under your hand or your affected (body) part and lighting it.”

In addition to medication, treatment often includes physical therapy and injections of anesthetic. But MacDonald says says she’s currently not getting physical therapy because Workman’s Compensation won’t pay for it.

She worked only a few weeks after the accident. Minor incidents, such as bumping her foot, caused too much pain, she says. The 2007 Glen Este High grad remained enrolled at UC Clermont until last fall, but says she withdrew because her condition caused her to miss too many classes. She hopes to continue taking classes online.

She sometimes uses a cane, crutches or a wheelchair.

“She struggles a lot,” says a friend, Christian Gaitskill of Amelia. “But she handles it really, really well. She really fights hard to stay positive about it. She wants to make a huge difference.”

Says MacDonald: “I’m a firm believer that everything happens for a reason. God will never give you anything you can’t handle. I really believe the reason I had to get this was to create awareness.”

She’s garnered a fair amount of visibility since 2004 by competing in pageants, and has enjoyed modest success. They’re not beauty pageants; there’s no swimsuit competition.

“At first, it was something to do over the summer,” she says. “Then it became … way too much fun. You meet girls from all over the state or the country, and you make lifetime friendships.”

Last summer she competed in America’s U.S. Miss scholarship program. It holds no statewide event in Ohio; MacDonald simply submitted materials online and was appointed to represent the state at the national event in St. Louis. Contestants are judged on academic achievement, volunteer service, casual wear, evening gown and an interview.

The pageant was MacDonald’s first after her diagnosis. She walked down the stage on crutches.

“It’s rough,” her mother, Kathi MacDonald, says, “because you never know with her one minute to the next how she’s going to be.”

Indeed, at one point during the competition, someone accidentally scratched MacDonald’s right foot just before she went on stage. Such an incident would have been inconsequential under normal circumstances, but it sent shivers of pain through her. She held herself together, but “when I got off stage I just collapsed in so much pain.”

In August she plans to compete again at America’s U.S. Miss nationals, this time in Chicago. She’ll deliver two speeches for the “spokesmodel” competition. In one, she’ll focus on a friend killed by a drunken driver. In the other, she’ll talk about complex regional pain syndrome.

It will be her last pageant, she says. But not the end of her attempts to raise awareness about a condition that’s not well understood. She has created a YouTube video in an attempt to get talk show host Ellen DeGeneres to take up the cause.

In the meantime, “I wish for one day to be able to do anything I used to be able to do,” MacDonald says. Go bowling. Dance. Play basketball.

Or simply take a pain-free stroll.

Debra thought that this web page would be useful to you:


Gene that controls chronic pain identified


http://www.cam.ac.uk/research/news/gene-that-controls-chronic-pain-identified/


 

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 11. 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.

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

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.

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

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

allodynia, hyperalgesia

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 rule in or rule out 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. 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

 

Two new drugs for pain are now in Canada.

NUCYNTA (long acting opioid)


JURNISTA ( prolonged release opioid)

For more information go to:www.janssen.com or call 1 800 567 3331.

 



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