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INTRODUCTION
The following articles are taken from the PARC PEARL published
by the PARC organization. Our journal addresses the latest issues
surrounding CRPS e.g. research, treatments, conferences and current
developments. Most of all, we feature personal stories of those
suffering with CRPS and how they cope with it. The PARC PEARL
is suitable for patients and professionals or anyone with a keen
interest in CRPS.
PARC PEARL: PREVIEW
OF MARCH 2004 ISSUE
AMAZING AYALA:
"It’s hard to believe that I
am the same person, who in 5 years of having full-body chronic pain,
had been hospitalized, in a wheelchair, and suicidal, to now, being
in control of my own life, and my pain."
Read part 2 of Ayala Ravek's
fiery and heartfelt address to the Canadian Pain Society conference.
Part 1 is in our Sept. 2003 issue and is definitely worth reading!
Back issues are available.
DR H.F.L. POLLETT
Part one of the interview with Dr Pollett, an anesthesiologist
and pain management doctor in Nova Scotia who also uses photon therapy
in his pain clinic to help manage the pain of CRPS.
BOOK REVIEW
"Pain is not a static process. It moves from point to
point along any number of paths and is shaped and defined as it
enters certain nerve intersections".
An in-depth book review on "The War on Pain"
by Scott Fishman MD. Harper Collins 2000 ISBN 006-019297-6
HC.
DMSO and NAC
Read about the Dutch treatments for early CRPS! Also, the latest
in "RSD and the Sympathetic Nervous System" by R Baron,
MD, Kiel, Germany.His address to the November 2003 Dutch RSD conference
is profiled.
PARC PEARL: Dec. 2003 Issue
Study identifies molecule linked to intense pain
The pain is chronic and intense and can be brought on by the most
innocuous event---like putting on a shirt.
For its sufferers, neuropath ic pain is a nightmare that won’t
go away. It can result from injury in a motorcycle accident, a mishap
during surgery or from common diseases including diabetes and
cancer. A new study sheds light on the process by which nerve signals
can become scrambled, leading the human body to feel such pain.
Researchers say a key culprit is a molecule knows as P2X4
receptor
that exists on the surface of cells in the spinal cord. In the case
of normal “good” pain ie.stepping on a tack, the pain
goes away after the tissue damage is repaired explains study co-author
Dr. Michael Salter, UFT.
“Neuropathic pain .... typically occurs when there
has been damage to peripheral nerves, which extend from the spinal
cord all the way to the fingertips and toes and other body surfaces.
That damage can lead to a rewiring of the cells inside the spinal
cord such that a light touch on the surface of the body ends up
being transmitted to the brain as a pain signal. “
Or what may also occur is an amplification of the signal in the
spinal cord with the same result. “In that situation the nervous
system is abnormal, it’s not normally wired up,” Salter
says.
“And then the changes that occur can be very profound.”
Even the light touch of clothing can be intensely painful. Such
pain is also highly resistant to strong narcotics like morphine
or heroin."
“Neuropathic pain can be highly debilitating, It
can destroy people’s lives"says Salter adding
that it affects millions of people worldwide.
Using rates and a variety of blocking drugs, the researchers were
able to pinpoint the role of the P2X4 receptor in transmitting neuropathic
pain. However, there is no single drug that blocks just that receptor,
and Salter says. Drugs that block several receptors are liable to
have unwanted side effects. “We’re at the very early
stages with this” said Salter, estimating that a specific
drug to block the P2X4 receptor
might realistically be available to patients in 5-10 years.
Source: St. Catharines Standard Aug. 14, 2003.
Reference: Nature 2003;424:729-730, 778-783.
PARC PEARL: Sept. 2003 Issue
SPECIAL FEATURE: This issue features Ayala Ravek's passionate speech
given to 500 delegates at the Canadian Pain Society Conference on
May 22, 2003. Aya, a fifteen year old with CRPS/RSD, discovering
at 11 years old that she had this painful syndrome, her struggle
to deal with it and how she manages today.
To read more about Aya, click here. Profiles in
Courage.
PARC PEARL: June
2003 Issue
Here is an excerpt from our summer issue:
SO YOU HAVE RSD...GET MOVING!
This is fifth in a series of articles about how
to cope with RSD. Last time, we began to talk about attitudes. Next
topic is exercise.
As many of you know, I am a big time fan of exercise. I am also
a big fan of "do what works for you". According to Dr
Jones who writes a column in our local paper, here are some general
reasons why exercise can help you.
Those who exercise:
- have 50% less risk of heart attack because it keeps the blood
platelets oiled so there is no blood clotting activity;
- it boosts good cholesterol (HDL) and helps remove LDL (bad cholesterol)
- fights hypertension, increases the pumping efficiency of the
heart
- fights depression and tension by releasing endorphins, effects
are similar to morphine
- fights obesity by controlling weight
- fights diabetes: 50 years ago 90% was inherited diabetes, now
90% of diabetes is a result of a faulty lifestyle and obesity
- fights osteoporosis: bone density is 40% greater in runners,
do weight bearing exercise and resistance training helps bone
density
- fights cancer: according to studies, less likely to develop
bowel cancer, kidney or brain cancer or leukemia
- fights arthritis: "Pain means damage" is not true--more
exercise, less likelihood of further damage and pain
- fights back pain: exercising the back muscles and strengthening
abs protect against back pain
- fights body rust: muscles more resilient, body is more agile
and fights aging
HOW DOES THIS APPLY TO ME?
So let’s summarize which of these reasons apply to people
with RSD/CRPS.
- exercise fights depression, a common symptom in CRPS
- many people with chronic RSD often develop diabetes. The reason
is not known but exercise can help prevent this.
- bone density is also affected by CRPS. Many have such thin
bones that they fracture easily. A program of preventative exercise
can help bone density.
- PAIN MEANS DAMAGE This last idea is the most popular reason
as to why most people with pain do not exercise.They have the
mistaken notion that any pain means that there is damage in the
body. Doctors need to encourage RSD patients to exercise. Exercise
done safely, under supervision, in a controlled fashion using
SMALL steps, will not damage the body. There is a difference between
HURT and HARM. Each person must find this out for themselves.
It is difficult to exercise when you have pain but WITHIN pain
tolerance this is possible. The old adage, use it or lose it applies!
OXYGEN
Another reason to exercise is that a Dutch study found “lack
of oxygen in the skeletal muscle of chronic CRPS patients”.
(van der Laan 2000) When you exercise, it brings oxygen into the
O2-starved areas that need it. Those with CRPS are not able to use
O2 efficiently at the cellular level in the body. Therefore, providing
an ample, continuous supply of oxygen through consistent exercise
just makes sense.
STAMINA
One more reason that is not mentioned by Dr Jones is that a consistent
program of exercise can generate more stamina in the body to fight
the chronic pain from RSD. Fighting the pain on a daily basis, takes
a great deal of energy that quickly uses up the body's stores. With
a consistent exercise program,carefully controlled, those stores
can be replenished. Possibly there will be some energy left at the
end of the day. This, to me, is the most important benefit of exercise.
So get moving and fight the pain!
SOURCE: Gifford Jones "Exercise, a Worthy
New Year's Resolution". St. Catharines Standard January 1,
2002.copyright PARC June 2003.
PARC PEARL: March
2003 Issue
Ketamine/Midazolam Anesthesia Treatments for CRPS 1:
CRPS-1 is a very hard to treat syndrome characterized by neuropathic
pain. CRPS can spread and become resistant to therapy. More treatments
are urgently needed. NMDA receptors are thought play an active role
in central pain and NMDA agonists as therapy for CRPS (and neuropathic
pain) are being studied.
METHODS
Ten patients with intractable CRPS-1 were given anesthesia which
consisted of ketamine and midazolam for 5 days. Some patients were
intubated and some had spontaneous breathing. On day 6 they were
slowly tapered from infusions.
OBSERVATIONS
INITIAL
All TEN responded by having no pain, no hyperalgesia, no allodynia
and an absence of CRPS-1 signs.
LONG TERM
Five out of ten had full pain relief for 2 months up to 3.5 years.
In 8/10 patients, after 6-8 weeks the original nociceptive pain
returned. In 7/8 the pain was at the original injury site. Hyperalgesia
and allodynia recurred in 4/10 who then received another ketamine
treatment. Success happened in 2/3. Patients were all able to use
less pain medication.
CONCLUSIONS
The authors are quick to say that this treatment shows potential
and could be an effective treatment option for severe CRPS-1. They
do raise the following issues: which patients would benefit most,
what selection criteria would be used to select patients, when to
treat the CRPS, and maintenance schedules for re-treatment.
This is the first attempt at using ketamine anesthesia for intractable
CRPS-1 and it does not come without its risks. Patients need to
be asleep and monitored carefully during the five day treatment.
Perhaps in future trials, a less risky form of treatment can be
found.
Source: Schwartzman, RJ et al Ketamine-Midazolam Anesthesia for
Intractable CRPS-1 2002
NOTE: Low dose ketamine treatment is available in Canada. For more
about ketamine and LDF read our March issue.
Excerpt from radio interview:
"ASK THE EXPERT" with John Marshall on CHSC 1220
AM
Feb. 14, 2003, St. Catharines, Ontario.
JOHN: Good morning. It is 10:05 I'm John Marshall. Our phone
lines will be open : 688-2472. Our special guest this morning is
Helen Small. She is our expert today and she is an expert in RSD.
Now, Helen what exactly is RSD?
HELEN: RSD stands for Reflex Sympathetic Dystrophy. It is also
known as Complex Regional Pain Syndrome.
JOHN: Wow...
HELEN: and there are two types: There is type 1 which is now known
as RSD and type 2 which is now known as causalgia.
JOHN: What exactly is, big names there,...but what do they
do? How did you discover that you had RSD first of all?
You had some symptoms but you weren't exactly sure what was going
on with you. What were the symptoms that you were experiencing?
HELEN: Well when I was up north, I opened a coffee jar in our trailer
and it fell on my foot and within a week I couldn’t walk on
it and I had severe pain, I had swelling, I had changes in skin
color and temperature and limited range of motion and within about
two months I was on crutches because I couldn't put any weight on
it and the pain was out of proportion to the injury.
JOHN: OK now that sounds like a really, really bad bruise,
but obviously it was more than that.
HELEN: Yes it was, um...it really was a soft tissue injury which
I didn't know at the time but was developing into RSD and it took
me a long time to find a doctor who knew anything about it. It took
approximately a year.
JOHN: A year?....
HELEN: Yes...
JOHN:..to discover what you had?
HELEN: Yes because the doctors really don't know anything about
it. They don't know how to diagnose it, they don't know how to treat
it, they really don't know how to recognize it so for me it was
not recognized for one year and then finally I stumbled my way into
McMaster, and in McMaster they did recognize it and they send me
off to a doctor at Hamilton Henderson by the name of Dr Harvey.
He diagnosed me and he treated me.
JOHN: So he knew exactly what this was that you had. So obviously
are there other patients out there, there are other people out there
that have RSD, possibly that may not know what it is. Is that correct?......
To read the rest of the interview, get your copy of the March
issue of the PARC PEARL. Click on HOW TO SUBSCRIBE.
PARC PEARL: Preview
of Sept. Issue
"COMPLIMENTARY ALTERNATIVE MEDICINE:
BALANCE IS THE KEY"
by Natalie K Arndt, RN, LAc.
Excerpt from presentation at the CRSDNET July Conference
TOPICS
Acupuncture and Oriental medicine (Acupuncture, Chinese herbs,
etc.)
Chiropractic
Physiotherapy
TENS and Microstim units
Activity
Water Exercise
Leeches (yep)
Massage
Boosting the Parasympathetics
Skin Brushing
Visualizations
Qi Gong
Epsom Salt Soaks
Heat
Diet
Supplements
Emotions and Balance
Topical Treatments
Magnets
Treating Swelling
There are many ways to counteract the effects of CRPS. Natalie
Arndt, has a great deal of expertise in dealing with it and shares
her ideas with you. Details in the September issue!
PARC
PEARL: Winter 2002
Intractable RSD or 27 Years and Counting ...?
Dear Friends of PARC:
There are innumerable walks in the PARC and this is one of them!
I was asked to write about my 27 year case of RSD. I intended
to write an objective, scientific article about this topic but
for various reasons (that I will have to analyze) I find this
extremely difficult to do. There were negative issues popping
up in this article I thought I had resolved several years ago„
like anger. So I decided to write you all a letter such as the
letters I have written to some of you in which I try to tell you
what works and what doesn't work for me, how do I get through
the days, and what treatments do I use. I hope in using this slant
I can remove all the negative stuff that kept creeping into my
first narrative. Most of all, I hope that the message that you
will get from this account is that yes, there IS life after RSD
for those of you with cases of lesser duration who might be wondering,
but on the other hand I don't want to conceal from you the unpleasant
painful problems you (and I) are facing and still have to face.
INTRACTABLE RSD: What does "intractable"
mean? Webster's New Ninth Collegiate Dictionary defines "intractable"
as "not easily managed...not easily relieved or cured.."
I have had a diagnosed case of RSD for 27 years. My RSD has been
now labeled as "intractable" because none of the current
major strategies for treating RSD seem to work in my case or,
if they did work in the beginning they no longer seem to help.
I am sure I have had RSD even longer than 27 years. I can remember
episodes from my childhood and teenage years of prolonged painful
sequels to injuries (such as a foot that I broke when I was at
University while playing tennis which took 2 years to return to
some semblance of normal functioning). My RSD seems to have 2
phases which I refer to as "smoldering chronic" and
"acute excruciating". The "acute excruciating"
phases are provoked by trauma, whiplash from a car accident, broken
foot, crushed fingers, dislocated broken shoulder, broken wrist
and sometimes less dramatic everyday plain bumps and bruises.
I appear to be able to work myself back from an “acute excruciating”
phase to “smoldering chronic”.
MY HISTORY: Starting in 1975 , the
year that my RSD became "official":
I crushed my fingers in my garage door and developed a classic
case of RSD in my right hand.
I was very fortunate to be referred to a plastic surgeon at the
Montreal General Hospital, Dr. Bruce Williams, who recognized
the problem immediately. Guane thidine (Ismelin) blocks were the
hot stuff at that time and I was put into an experimental program
which examined the effectiveness of such blocks in restoring circulation
to RSD afflicted parts. These blocks seemed to work in restoring
circulation, but what was really even more effective was the regimen
imposed on me by a therapist named Gerda who specialized in the
rehabilitation of injured hands.
We worked every day of the week (including Saturdays) for months
(at least 8 months) and she and I took my hand from zero mobility
back to about 95% function.
My acute RSD seemed to have disappeared. But of course it didn't
really. Even in 1975 and in years before that I was suffering
from continuous chronic pain in various body areas (especially
in my neck, back and previously injured foot). During most of
the 1970s and 1980s I was given almost continuous physiotherapy,
and at one point was even investigated by a rheumatologist for
a long standing case of multiple joint inflammation, which he
could not correlate to anything He never mentioned RSD and neither
did I since I didn't realize at that time I was stuck with it.
I did feel that the continuous physiotherapy kept me from deteriorating
rapidly which brings me to one of my major pieces of advice.
Get moving and stay moving. If you don't use it, you'll lose
it!
It's worked for me and it'll work for you.
EXPERT DIAGNOSIS :I mention the diagnosis
in 1975 by Dr. Bruce Williams because thanks to his expertise
and eminence I have never had this diagnosis questioned by any
other physician or surgeon whom I have seen subsequently nor have
I ever been told that I do not have RSD ----an experience that
many of you have had. This early diagnosis by such an eminent
specialist really helped me to avoid all the terrible degrading
experiences that I know many of you have experienced and are now
experiencing with the arbiters of disability pensions, disability
leaves, compensation payments, sneaky videotaping by compensation
boards etc. I have been spared all of that thanks to that expert
diagnosis.
REINJURY: My latest and really most
disastrous injury occurred on April 6, 1996 when
I fell over a box of books in the dark in my house, dislocating
and fracturing my right shoulder.
What happened to Barbara next? To find out, read the Winter 2002
issue.
PARC PEARL Summer 2002
FREE RADICALS
AND CRPS
What are free radicals (FR) and how do they work in the body?
A free radical is an "atom or molecule that contains one
or more unpaired electrons.” An unpaired electron can bond
with another atom or molecule. It causes a chemical reaction.
FR can effect dramatic changes in the body and cause a lot of
damage to cells or impair the immune system . Many FR (e.g. superoxide,
hydroxy radicals, various lipid peroxides) play a role in various
diseases in the body such as inflammation, arthritis and pulmonary
diseases.
To counteract FR, the body makes free radical scavengers or antioxidants
which protect against FR by neutralizing them. Examples of free
radical scavengers which are enzymes, are catalase, superoxide
dismutase and glutathione peroxidase. Antioxidants such as Vitamin
A, beta carotene, Vitamin C and selenium also neutralize free
radicals by binding to their free electrons. If there is excessive
FR damage, damage to cells and tissues can occur. If a large number
of free radicals is formed, it stimulates even more FR to form.
This can lead to even more damage.
So what do FR have to do with CRPS?
What are Dimethylsulfoxide, Mannitol and N-Acetylcysteine?
What ground breaking discovery did the latest Dutch research
find about about them?
How are they used as treatment for CRPS in Holland? What
kind of success rate do they have? Is this treatment being used
anywhere else?
Details in the Summer issue! You can
order it through PARC.
(Source: Perez R. CRPS 1 A randomized controlled study into the
effects of two free radical scavengers and evaluation of measurement
instruments” Thesis ISBN #90-9015456-6)
We would like to thank Drs.Ilona Thomassen, Chairperson of the
Nederlandse Vereniging van PTD Patienten (Dutch RSD Association),
Nijmegen Holland for sharing with us this study by Perez. Thanks
so much, Ilona!
PARC PEARL Summer
2002
This is a review of an excellent journal article by Drs. Raja
and Grabow focusing on diagnostic criteria for CRPS and the complex
issues surrounding an accurate diagnosis.
COMPLEX REGIONAL PAIN SYNDROME 1 (Reflex Sympathetic
Dystrophy)
Srinivasa N. Raja, M.D. Theodore S. Grabow, M.D.
In the medical community, the mystery of CRPS/RSD continues to
unravel and it is a complex, slow process. Witness the problems
with diagnostic criteria about which there is still considerable
disagreement. Dr. Raja and the Special Consensus Committee use
diagnostic criteria as outlined by the IASP (International Association
for the Study of Pain). In part, the criteria include several
basic criteria, plus signs and symptoms.
The symptoms are:
(1) “at least one symptom in each of the following general
categories: sensory (hyperesthesia = increased sensitivity to
a sensory stimulation), vasomotor (temperature abnormalities or
skin color abnormalities), sudomotor-fluid balance (edema or sweating
abnormalities), or motor (decreased range of movement, weakness,
tremor, or neglect); and “
(2) “at least one sign within two or more of the following
categories: sensory (allodynia or hyperalgesia), vasomotor (objective
temperature abnormalities or skin color abnormalities), sudomotor-fluid
balance (objective edema or sweating abnormalities), or motor
(objective decreased range of motion, weakness, tremor or neglect).”(3)
(Please see original article for rest of criteria)
Even with this specific list of criteria, he cautions that: “currently,
there is no test that is easy to perform in the clinical setting
to differentiate CRPS from similar pain states of separate origin.
“ There are other pain syndromes which are to be considered.
Diseases to be ruled out include: “diabetic and small-fiber
peripheral neuropathies, entrapment neuropathies, thoracic outlet
syndrome, and discogenic disease,” Other possible diagnoses
include “deep vein thrombosis, cellulite, vascular insufficiency,
lymphedema, and erythromelalgia.”To further add to the confusion,
Raja states there is no agreement on " how many of the signs
and symptoms ...described in the criteria need to be present for
an accurate diagnosis.”
Are we confused yet?......
(Source: Anesthesiology 2002;96: 1254-1260)
PARC PEARL Summer
2002
Are there stages of RSD? What have the researchers recently uncovered?
What other problems surround a valid diagnosis of CRPS/RSD? Read
all about it in the Summer 2002 issue! Practical advice from a
long term CRPS. patient to the newly diagnosed.
SO YOU HAVE RSD.....
(First in a series of articles about informed personal choices.)
Imagine that you have just come home from the doctor with a diagnosis
of CRPS/RSD. Sound familiar? What do you do now?
You may be very confused, uncertain, angry or afraid. Without
knowledge about the disease, you cannot move forward.
In any chronic pain disease, attitude plays a deciding role.
How you approach the illness, has a great deal to do with how
you cope and live with it every day.
BUILDING SELF KNOWLEDGE
The first helpful thing is to educate yourself . Having current
information on CRPS is a crucial factor in eliminating fear and
anxiety. You cannot deal with something that you don’t understand.
Start with basic knowledge about CRPS (definition, signs, symptoms,
diagnosis and treatments)......The next thing is finding “useful
information” about what you as a person can do about it.What
steps can I take to make my life more comfortable?
Thirdly, a positive attitude really sets the tone for how you
will proceed....
YOUR FAMILY
"My family does not understand" is what we hear so
often. The reason is that you, as the CRPS patient, have not informed
them. It is your responsibility to discuss....
News you can use! What other helpful ideas and tips are there
for the newly diagnosed CPRS person? Read all about it in the
Summer 2002 issue!
HOW TO SUBSCRIBE
Did we mention that you get a free gift for joining? To subscribe
to the PARC PEARL, just Email us and we will take care of the
rest. Contact us.
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