WELCOME TO THE
- Find PARC on Facebook as RSDCANADA:
- We are looking for contributions
to our Pilot Program for Patients 2017.
- To donate, purchase or renew memberships,
please click button below.
As of January 4, 2017, the Sara Study has closed.
We thank those who took part.
LDN:Low Dose Naltrexone
Low dose naltrexone has been studied for CRPS and
offers hope. LDN lowers the inflammation levels in the body. For
more information go to:
INTENSE PAIN SOON AFTER WRIST FRACTURE STRONGLY
PREDICTS WHO WILL DEVELOP CRPS
Recent research has found that 1 in 26 with a wrist
can develop into CRPS.
LIVING A LIFE IN PAIN:
STORY OF RSD/CRPS
features four CRPS patients, a CRPS doctor,
and PARC's Executive Director.
a Life in Pain
Cost is $10 plus shipping = $13.50 in Canada
Please ask us about International rates.
Major credit cards will be accepted through Paypal.
Topics indude: Ketamine Interview with Dr. Ronald Harbut MD PhD.
This doctor orginated the ketamine protocol.Other topics include
Self management, Bits and Pieces, Why Yoga?
PAYING IT FORWARD
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 web site 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.
The Internet may give you the research on CRPS but it is hard to
interpret. When reading a research paper, please ask yourself these
Is this paper valid and does it measure what it says it measures?
Is the conclusion valid? Are there any flaws in the data?
Who authored it and what is their reputation?
In the long run, is this paper important?
Will this drug or treatment be available? Where? When?
CRPS is very complicated and hard to research unless the authors
completely understand the elements of CRPS.
Who is doing what element of CRPS research? There are many lines
of research to pursue i.e. inflammation, blood fow, nerve damage
and brain issues.
Our newsletter draws the big picture for you and brings together
all the elements of CRPS research with important conclusions.
OPTION 1: Deluxe
membership (3 issues per year, PARC Alert, Survivor Club,
Ongoing Support and Self Management Program for CRPS are included.
Total cost for these services is $35 per year. The newsletter
alone is $25 per year. Extra services only cost $10 and you are
helping another CRPS patient find his way.
Newsletter only: $25 per year .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:
This card is the size of a credit card easily
stored in a purse, wallet or pocket.
DO YOU HAVE
IT LASTED LONGER THAN THE EXPECTED HEALING TIME?
TEXT: Signs and symptoms of RSD/CRPS.
Do you have patients recently diagnosed?
Do you need cards for your patients, nurses, hospital or clinic
This sleek 4"x 3 3/8"pocket card has
concise RSD/CRPS information.
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. (International rates available on
Q: WHAT IF I ONLY
WANT CARDS ?
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 PO BOX 21026
OPTION 2 : To
order Pocket Cards, online transactions through Paypal.
Proceeds go to our Education Programs
GROUP OF NIAGARA(CPSN)
MEETS Second WEDNESDAY
OF THE MONTH
DAY/TIME: 1:30 PM
2017 MEETING SCHEDULE:
from out of town, please verify meeting date.
Please read this list and if you can help in any
way, we would be very appreciative.
- sponsors for our 2017 pilot program for patients
- volunteers to start support groups (support group kit)
- volunteers for various jobs
- office supplies
- gift cards
- sponsors for various projects
STAINED GLASS ART CARDS!
WATER (Design 2 of
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
(Design 3 of 8)
To download an order form, click here:
We are accepting online payment.
Major credit cards are accepted.
Please view Yolande Clement's successful
battle with CRPS at:
CRPS: A Success Story
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
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.
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).
Possible triggers of CRPS
Intramuscular injection of medication or illicit drugs
Crush injuries and blunt trauma
Neck or shoulder injuries
Acute traumatic carpal tunnel syndrome
Sprain, fracture, or dislocation
Carpal tunnel release
Fracture repair (Colles fracture)
Nerve compression syndromes
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
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
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).
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 (pain)
changes in skin colour, temperature
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
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.
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
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 )
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
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
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
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
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.
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.
©2002-2017 PARC Organization