The Sara Study is still looking for participants.
Low dose naltrexone has been studied for CRPS and
offers hope. LDN lowers the inflammation levels in the body. For
more information go to:
can develop into CRPS.
We are having a CRPS researcher, Dr. Gary Bennett
PhD November 2 from 7-8 PM on our Facebook page.
Please ask us about International rates.
Major credit cards will be accepted through Paypal.
Your newsletter contribution is used to help others with CRPS who
have lost their way. Contributions 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, someone with CRPS has donated to help you.
The Internet may give you the research on CRPS but it is hard to
interpret. Please ask yourself these questions:
Is this paper valid and is the paper well done? 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 author
completely understand the elements of CRPS. How is the research
organized? Who is doing what part of CRPS research? CRPS is complicated
and there are many lines of research to pursue. Where does this
paper fit in the big picture?
Our newsletter draws the big picture for you and brings together
all the elements of CRPS research and important conclusions.
We also discuss possible options for a self-management program
on CRPS created by PARC.
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.
We are accepting online payment.
Major credit cards are accepted.
PAGEANT CONESTANT IN CONSTANT PAIN:Ashley
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,”
“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
“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
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
“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
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
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
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.
Or simply take a pain-free stroll.
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
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).
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.
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