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, drugs, treatments, conferences
and current developments. Most of all, we feature personal stories
of those suffering with CRPS and positive ways to cope. The PARC
PEARL is suitable for patients and professionals or anyone with
a keen interest in CRPS.
PREVIEW OF NEWEST
- NATIONAL PAIN AWARENESS
WEEK NOV. 1-8: Dr. Zacharias and Dr W Chindemi
AFTER OXYCONTIN" by Willy Noiles.
- WHAT IS PARC DOING? PARC
- Healing with Yoga
- MRS 2000
- Fighting Fatigue
- Watsu Therapy for Pain
"Watsu therapy is used in the management
of chronic pain conditions that may not respond well to conventional
therapies. As the weight of the body is surrendered to the water,
tired joints and muscles are relieved of their load bringing pain
relief and increased mobility.”
Watsu is water and shiatsu therapy developed in 1980 by Harold
Dull, a shiatsu practitioner. Water promotes the flow of qi (chi)
which is the body’s life energy. Watsu uses stretches. massage,
and pressure point manipulation. The client is held afloat during
treatment by a Watsu practitioner in warm water. The mind becomes
quiet, the spine becomes loose and supple. Muscles are supported
by the water. The client can reach a deep state of relaxation.
Watsu can be helpful for fibromyalgia, arthritis, fatigue, sleep
problems, stress. anxiety, depression, headaches, and acute or chronic
Therapy uses stretches, rotations, rhythmic notions, with breathing
creating a “graceful water dance.”
Watsu can be a deep meditative state or facilitate a release of
emotions. Warm water on the skin releases muscle tension, and the
feeling of floating promotes calm.
“Watsu is a powerful tool for stress reduction, engaging the
parasympathetic nervous system, the unconscious message centre that
tells the body to slow down and rest.”
Effects of deep relaxation makes the heart pump slower and more
efficiently, blood pressure is reduced, breathing deepens resulting
in better sleep, less anxiety, and improved digestive function.
- SURVIVING A LOVED ONE'S CHRONIC
- PT TREATMENT PROTOCOL
PAIN MEDS DOES NOT EQUAL ADDICTION":
( Interview with Dr Jovey) by Willy Noiles
- Phoenix Conference March 27-28:
Differential Diagnosis of CRPS
- THE LAW OF INCREASE by Judy Tucker
- "THE NATURAL HISTORY OF CRPS"
by Dr R. Schwartzman MD Pain 2009
"THE NATURAL HISTORY
Clinical Journal of Pain 2009
A study of 656 patients with CRPS for more than 1 year was conducted
over 11 years from July 1995 to January 2006. Done by questionnaire,
the retrospective study covers symptoms, pain intensity, what
aggravates and what eases CRPS, causes, other symptoms, and makes
conclusions about disease duration. The average age of a CRPS
patient is 37.5 years and 80% are female. Most common causes of
CRPS are fracture, sprain or trauma (injury). Upper extremity
is slightly more often affected than lower extremity. The average
intensity of pain based on a 0-10 scale is 6.53 to 8.75. During
the first year of CRPS, the pain intensity was 6.91 and increased
to 7.92 after 15 years.
Pain spreads over time in the majority of patients. In 31% contiguous,
(proximal), 11.5% (right to left side), 10.8% (right arm to right
leg), 11.3 % opposite side (right arm to left leg). The most common
was contiguous spread early in the course of CRPS around the 1-2
year mark. It was also the most common type of spread up to 10
years duration of CRPS.
The survey of medications revealed that:
- 74% took narcotics
- 68% used anticonvulsant's
- 60% took NSAIDS (non steroidal anti-inflammatory drugs)
- 52.8% used antidepressants
- 15.3 % anti-anxiety drugs
- 11.5% sleeping pills
- 11.3 % steroids
What makes CRPS better?
- 50% said medications
- 42% said rest
- 12% said hot weather
- 11% said hot/warm water
- 7.6% said elevate limb
- 5.8 % said massage or PT
What makes CRPS worse?
48.2% said cold
37% said physical therapy
17.3 % said walking
15.4 % said standing too long
- 12.3% said stress
Other reported symptoms:
71. 9% said difficulty sleeping
68.5% said tiredness
64.7% said weakness
- 61.5% said headaches
Although the study found CRPS to be progressive,
“after 1 year most of the signs and symptoms
were well developed and demonstrated only moderate increase
over the duration of the illness.”
Previously, CRPS was often thought to get only progressively worse
but now the evidence points to only a moderate increase after
1 year’s duration.
Source: Schwartzman RJ et al Clinical Journal
of Pain 2009; 25: 273-80
PAIN MEDS DOES NOT EQUAL ADDICTION
by Willy Noiles
The fear of addiction to pain medications is a
concern many with CRPS and other chronic pain conditions have
either faced personally or heard from family members or physicians.
Unfortunately, as Dr. Roman Jovey acknowledges, there has been
a lot of confusion about addiction.
Opiates have been around for thousands of years and there have
been stories of addiction throughout that time. Part of the problem
is the press and their need to sell newspapers or draw in viewers.
“It’s always the 10 per cent who
get all the attention,” Dr. Jovey, program medical
director for CPM Centres, says.
The other problem is confusion, amongst both
physicians and the press. Reporters, doctors and nurses have mistaken
labeled physical dependence ‘addiction.’ Loved ones
read or hear this misinformation and pass this misinformation
Read more in the summer issue...
WHAT ARE YOU TAKING?
“It’s a blue pill.”
by Willy Noiles
How many times have you heard a variation on this when asking
a friend what their doctor has prescribed for them? While there
is a part of us that laughs that somebody could be so scatterbrained,
it’s also a sign this friend isn’t an active participant
in their health care.
The first rule in drug safety is knowing the name of the drug
you’ve been prescribed and the directions. When your doctor
issues a new medication, you should ask him to pronounce the name
of the drug and spell it out. You should write it down in your
notepad or on a sheet of paper in your handwriting. When you get
home, be sure to add this to the complete list you should also
have of all the medications and supplements you’re currently
If you’re having trouble grasping the name, don’t
be afraid to ask your doctor to pronounce it again. Also ask for
the generic name of the medication. (This could be helpful if
you don’t have a good drug plan.) And be sure to know specifically
why your doctor is prescribing this particular medication for
you. It’s better to ask him when you’re still in his
office, rather than wondering about it the following day.
Of course, we all know someone who doesn’t bother to ask
why they’re taking a certain drug. They figure the doctor
knows what he’s doing so everything is OK. But everything
is not OK. The sad truth is that doctors sometimes get too comfortable
prescribing the same drug over and over to different patients.
While there are thousands of drugs available, doctors rarely learn
all of them so they tend to fall into a pattern of familiarity.
This is not meant to slight any doctor, but to acknowledge they
are human beings.......
PARC PEARL WINTER 2007
FROM WINTER ISSUE:
We were fortunate to have Dr David Shulman come to talk about
chronic pain for National Pain Awareness Week Nov 4-10,2007. He
is a busy chronic pain doctor at Rothbart Pain Clinic in Toronto
and two area hospitals.
Pain is a personal experience and is very subjective. No one
but you can feel your pain. Pain is whatever the sufferer says
it is. Chronic pain is defined as pain for more than 3 months.
The gate control theory proposed by Melzack and Wall in the 70’s
states that the large fibers inhibit the small fibers ‘
transmission of pain. Capsaicin is a good example of heat which
competes with the pain signals to “drown them out.”
Chronic pain is “pain that has outlived its usefulness”
and the “pain signals become embedded in the cells in the
nervous system so that the pain is hardwired in the body.”
Cells change their anatomy and this is known as “neural
An IPSOS Reid 2001 poll determined that chronic pain is the most
common chronic illness with 30% of the population having pain
each day. By comparison, another common illness is high blood
pressure which affects 27%.
Pain is far reaching in its complex effects: financial problems,
legal problems, emotional mental and relationship and family issues.
Chronic pain patients are also more prone to infections.
There is no single way to test for chronic pain. The doctor simply
asks if you have pain. A functional MRI (fMRI), not in general
use, shows that the brain lights up in the cortex of a person
People in pain look differently; one lady was smiling while another
looked very stressed and sad. There are many faces of pain.
In the IPSOS REID poll, 1 in 15 patients were receiving treatment
for their chronic pain.
We shared our experiences with many non-pharmacological or
Manipulation e.g. chiropractic
Cognitive behaviour therapy
Hyperbaric oxygen therapy
Medications are given for mild, moderate and severe pain. For
mild pain, NSAIDS, aspirin and Celebrex while for moderate pain
one used Tylenol 3, Tramacet, Percocet and Percodan which are
short acting pain medications. Severe pain was the domain of narcotics,
methadone, Fentanyl and other slow release medications or patches.
We discussed generic vs. brand names, the use of methadone and
the controversial marijuana use vs. cannabinoids.
Opposing views were evident. The doctor advocated cannabinoids
because they were a standardized dose of THC. A vocal patient
who had a permit from Health Canada to grow and smoke marijuana
for his own use, advocated marijuana because it was the only thing
that helped his pain. Cannabinoid drugs included Cessamet, Sativex
(nasal spray) and Marinol. Sativex was most useful for CRPS pain
Medical marijuana has taken many forms such as oil, tincture and
Special thanks to Dr Shulman for a comprehensive, interactive
presentation. All of our questions were answered throughout the
lecture and we thoroughly enjoyed his spontaneous humour.
FALL EVENT: November 10
- PARC NEWS 2007-8
- PAIN AND PIZZA
- PAIN and PERSONALITY:Enneagrams
- GOOD FATS, BAD FATS PART 3 Brain
and nerve nutrients
- PAIN MYTHS
- GREAT PAIN BOOKS!
Fall 2007 Issue
PAIN AND PERSONALITY
Pain and personality types are a fascinating way to look at how
people handle pain.
Not only does your mood and thinking influence pain but so does
the way you react to stress. Each personality has strengths, weaknesses
and challenges in dealing with pain. To handle pain effectively
it helps if you understand your personality type and how you react
to pain. One personality type is not better than another. We are
all different. Some people have attributes of several types although
they are mainly one type. Some may have features of the adjacent
numbers e.g. Ones may have characteristics of nines and twos.
Let’s look at the various personality types and see how they
deal with pain. Perhaps you see yourself in one of these:
In this issue, we will explore the first two types:
ONE: THE PERFECTIONIST:
Chief Motivation: to do things the right way, improve yourself
Main idea: ”I need to make the world perfect”
Chief Fear or Avoidance: to be imperfect
Strongest positive traits: ethical, responsible, fair, conscientious,
principled, self, disciplined, organized
Strongest negative traits: judgmental, righteous, rigid, critical
of others, overly serious, controlling, anxious
Core Issue: anger
How his strengths help a perfectionist cope:
Persistence, inability to give in, good follow through, will follow
instructions and try new treatments, and be consistent in their
own pain management
Detail oriented perfectionists help themselves find multiple solutions
Use anger in constructive ways i.e. be the Reformer and spearhead
ADVICE FOR THE PERFECTIONIST:
Stop blaming yourself and realize that it was not your fault.
Stay focused on the positives, let go of doing things perfectly,
and accept what you can do.
Give yourself a break and try not to be so perfect, it’s not
possible and the effort is not good for you.
Many issues are unfair but analyze and then pick your battles.
Stay connected to your friends. Work on acceptance, be grateful
for what you have
TWO: THE GIVER
Chief motivation: to be loved and appreciated
Main idea: “The way to get love is to give love”
Chief fear or avoidance: To appear needy
Strongest positive traits: positive, nurturing, sensitive to others’
needs, loving generous, enthusiastic, positive
Negative: possessive, prideful, hostile, martyr-like, manipulative,
Core issue: pride (being needed by others while having no needs
STRENGTHS OF GIVER:
Givers are positive, action-oriented people who love to help others.
They are reliable and helpful.
ADVICE FOR THE GIVER:
Asking for help is their biggest challenge as well as asking for
what they need. In order to take care of others, you have to be
in good shape yourself. “Treat yourself as your own best friend.”
Take responsibility for helping yourself.
Source: Schneider Jennifer MD PhD Living
with Chronic Pain Healthy Living Books Hatherleigh Press
2004 ISBN 1-57826-175-9
To view card go to WHAT'S
NEW? PAGE .
SUMMER ISSUE 2007
SPRING EVENT: June 2 Toronto
- Dr David Shulman, Rothbart
- PARC NEWS 2007-8: What are we
- CRPS MYTHS:What is fact and fiction?
- PAIN PITFALLS part 2
- GOOD FATS, BAD FATS PART 2
- RSDCHAT: New Chat Room
GOOD FATS, BAD FATS
Inflammation helps the body heal but it can also cause harm. When
you have an injury or an illness, the area is flooded with blood.
This gives the area extra white blood cells which kill infection
and also the necessary nutrients for healing. Extra blood leaks
out causing swelling, pressure on pain nerves, stiffness and warmth.
The area becomes sensitive.
A diet high in animal fat and common cooking oils increases inflammation.
Did you know that a high fat diet “rots your brain?”
The brain is mostly fat and each brain cell is 60% fat. If you send
more dietary fat into the brain tissue there are harmful free radicals
which increase oxidation. Then the brain tissues die from excessive
oxidation. Dietary fat turns your brain cells “rancid.”
Did you know that the brain requires 20% of all oxygen pumped by
the heart? Anything that starves the brain of blood, stops oxygen
and nutrients from getting to the brain.
It also keeps the brain from flushing away toxins and dead tissue.
Eventually impaired circulation kills brains cells by the billions.
A high fat diet is worse for your brain than any nutritional error.
Nutritional errors can be fixed by ingesting foods or supplements.
If one stops eating high fat foods, starts exercising, takes some
nutrients, the fat can clear out of the blood vessels that lead
to the brain. Well this is good news….
Foods that supply your brain and nerves should not be empty calories
like sugar, and refined starches. Instead, eat wholesome food e.g.
whole grains, vegetables, fruits, high protein soy products, non
fat dairy products and various beans (rich in protein).
If you are not already a vegetarian, eat occasional portions of
meat, and have several servings of cold water fish e.g. salmon or
tuna each week. If you avoid meat completely, you will be able to
ingest enough protein and will avoid the common fish animals fats
which aggravate inflammation.
The diet should consist of 15-20% fat, 40% protein and 40% complex
carbohydrates, High protein which promotes muscle growth and regeneration
which will aid recovery from many common disease such as back pain,
arthritis, and fibromyalgia.
Next issue: besides an anti- pain diet, some of the nutrients which
will help defeat pain.
Source: Khalsa DS MD The Pain Cure Warner Books
To get your copy along with
a free POCKET CARD, contact
To view card go to WHAT'S
NEW? PAGE .
Vol. 6 No. 20: SPRING 2007
- PARC'S SPRING EVENT: "Living
with RSD/CRPS" June 2 Toronto
- More on Chicago CRPS conference
2006: Interventions by Dr J. Prager
- Personal Stories: Bev
- PARC NEWS: What are we doing?
- PAIN PITFALLS: Part 1
- Good Fats, Bad Fats
- Ask Dr Charlie (Clinical Psychologist)
PAIN PITFALLS: INTRODUCTION:(page
©PARC PEARL 2007
Even if you have a good diet, eat the good fats and avoid the bad
fats, (see p. 6), diet and nutrition will be useless if you do not
know about the four pain pitfalls. Learning what they are and how
to avoid them will help.
Eating takes your mind off the pain and it is a great distraction,
but can one can eat too much?. Yes, be aware that it undermines
your progress in fighting pain. Overeating is usually done on sugary
foods which disrupt the hormonal balance and also the blood sugar
levels. Not only is this not good but overeating will cause weight
gain which increases strain on muscles and joints. Being overweight
will damage self esteem and we need our self esteem to provide the
“gas” which drives our willpower. Eating right requires
discipline and energy, both of which will be sabotaged by overeating.
So, now what? What about a crash diet? This is pitfall number 2…
It is hard to eat when you are in a great deal of pain but if you
don’t eat enough, it can be just as dangerous as not taking
your medicine. Remember, the body needs a balance of many nutrients
to function well. Pain patients need an abundance of certain nutrients
to fight pain.
Undereating also can trigger low blood sugar (hypoglycemia) and
this makes patients sensitive to pain. It stops the brain’s
fight against pain. It also contributes to lack of certain nutrients
needed by the body to function well. Certain nutrients can be lacking
in pain patients:
Vitamin C: This antioxidant is required
for at least 300 metabolic functions in the body including tissue
growth and repair,. It is needed to make several neurotransmitters
and protects your brain from free radicals. If you are somewhat
deficient in this vitamin, it can cause a form of “scurvy”
which is characterized by gums that bleed when brushed, Vitamin
C increases susceptibility to infections, joint pains, lack of energy,
poor digestion, prolonged wound healing time, bruising easily and
tooth loss. A deficiency can also create pain in muscles joints
and bones. The pain comes from a lack of “connective tissue”
which vitamin C helps to make. It also promotes would healing.
Vitamin D: A milder deficiency can cause loss
of appetite, a burning sensation in the mouth and throat, diarrhea,
insomnia, visual problems and weight loss. Severe lack of this vitamin
can cause “osteomalacia” a bone weakening illness that
causes pain in bones. Usually the pain is in the legs or back. It’s
similar to osteoporosis.
B Complex: The nerves and brain benefit most from
B complex. Severe deficiency can cause “spontaneous”
firing of pain nerves creating pain throughout the body and in the
A deficit of Vitamin B can make you feel irritable, lethargic, nervous
and more sensitive to pain.
A severe deficiency of the B vitamin inositol can cause inflammation
of the nerves. Also of interest, is that fact that large amounts
of caffeine may cause a shortage of inositol in the body. (2)
Magnesium: This mineral is used for proper function
of the nerves. It helps nerves cells absorb the nutrients they require.
Most people do not get enough magnesium from their diet. A lack
of magnesium can cause irritability and nervousness. Pain in muscles
are a result of this deficiency. Some researchers believe that magnesium
deficiency contributes to fibromyalgia. In Holland, the Dutch doctors
prescribe magnesium powder for their CRPS patients to help with
Calcium: This mineral helps with formation of
strong bones, teeth and gums as well as in the transmission of nerve
impulses. Lack of calcium causes leg cramps especially at night.
So how do you know how if you are deficient in any of these vitamins
or minerals? What amounts should you take for maximum benefit? These
answers can be found through a qualified nutritionist or naturopath
who can determine how best to help you. In the meantime, eating
foods that contain some of these substances can be helpful.
NOTE: “PAIN PITFALLS 3 and 4” in the
Sources: 1. Khalsa D.S. MD The Pain Cure Warner Books 1999.
2. Balch, James F MD. Prescription for Nutritional Healing”
3. PARC files ©PARC PEARL 2007
Disclaimer: This newsletter is for health information
purposes only. Please consult your doctor before starting stopping
or changing any treatments.
December 2006 PARC PEARL Vol 5 No.19
- REVIEW: November 8, with Dr Bieman-Copland,
Clinical Psychologist :"Mangling Chronic Pain"
- PARC NEWS: Spring Event
- The POWER OF ONE: Dr Copland
- Chicago RSD/CRPS Sept. 8.9 Conference
- Pain Practitioner Vol 16 No 1: CRPS Special
- Physical Therapy and Functional
- Thermography: Dr Getson (read below)
- Personal Story: Life after DCS: by Bryant
USE OF THERMOGRAPHY
IN THE DIAGNOSIS OF CRPS: A PHYSICIAN’S OPINION
Dr. P. Getson DO Pain Practitioner 2006 Vol. 16 No. 1
ARTICLE FROM PARC PEARL DEC. 2006
Diagnosing CRPS is difficult at best and doctors have yet to
come up with a definitive test. One helpful diagnostic tool
which helps put the pieces of the puzzle together is thermography.
It has been around since the 1950’s and still is used
in NASA. Neuromuscular disorders can be diagnosed with thermography.
With regard to CRPS, the infrared cameras are hi-tech computer
images which measure changes in skin temperature. “The
sympathetic nervous system (SNS) controls these changes and
changes in the sympathetics cause changes in the thermal imaging
which do not conform to dermatomal patterns”.
Thermography is exacting in measuring temperature and temperature
differences. “Thermography show changes in skin temperature
to one tenth of one degree centigrade. Lack of symmetry is out
of conformation to dermatomal distributions.”
Measurements on a CRPS patient within the first six months shows
the affected side to be warmer than the contralateral side by
0.9 Degrees C which is considered as standard for sympathetically
maintained thermal asymmetry. Sometimes this uneven temperature
is 1.5-2 degrees C. difference. After six months, the pattern
changes and the affected side is the “cold side”.
The temperature difference is often seen as very striking, vivid
While feeling the affected side with the hand measures temperature,
the thermogram is much more sensitive and the temperature scale
is very sensitive also. It is specifically calibrated to measure
very small differences. It can be adjusted to allow for room
or body temperature.
Another interesting thing to observe in “CRPS is the spreading
patterns which can be seen 6-9 months prior to the occurrence
of symptoms in a limb that has been affected with dysfunction
but has not yet become symptomatic“. Patients mention
symptoms in one limb which are seen as thermal abnormalities
in other limb.
Thermography means that patients can be diagnosed and treated
New cameras have real-time imaging properties that could help
monitor a limb while a spinal cord stimulator is being installed.
Thermography could help the surgeon place the leads accurately
so that the patient gets maximum benefit from the stimulator.
Thermography is the best tool we have to date to help us with
diagnosis of CRPS. It also completely validates the symptoms
described by the patient. he/she is not making it up, exaggerating
Earlier diagnosis means earlier treatment and a better prognosis.
Thermography continues to surprise us with its uses and is valuable
help in making a diagnosis of CRPS.
SOURCE:USE OF THERMOGRAPHY IN THE DIAGNOSIS
OF CRPS: A PHYSICIAN’S OPINION by Dr P Getson DO Pain
Practitioner Vol. 16 No. page 72-3 : review article in ©PARC
PEARL Winter Issue 2006
SPRING 2006 PARC PEARL
Vol 5 No.17
DISTORTIONS: PART 2
To help yourself cope with the upsetting emotions that chronic
pain can produce, try positive self-talk. Self-talk is the endless
stream of thoughts that run through your head every day. Some
people refer to this process as “automatic thinking.”
Your automatic thoughts may be positive or negative. Some are
based on logic and reason. Others may be misconceptions that you
formulate from lack of adequate information. The goal of “positive
self-talk” is to weed out the misconceptions and challenge
them with rational and positive thoughts.
Here are some common forms of irrational thinking. Try to identify
and challenge these types of thoughts:
.* Filtering You magnify the negative aspects
of a situation and filter out all of the positive ones. For example,
you had a great day at work. You completed your tasks ahead of
time and were complimented for doing a speedy and thorough job.
But you forgot one minor step. That evening, you focus only on
your oversight and forget about the compliments you received.
* Personalizing. When something bad occurs,
you automatically think that you're to blame. For example, you
hear that a family picnic has been canceled and you start thinking
that the change in plans is because no one wanted to be around
* Generalizing. You see a troubling event as
the beginning of an unending cycle. When your pain fails to go
away, your thoughts may proceed as follows: "I'll never be
able to do what I used to." "I'm a burden to everyone
around me." "I'm worthless."
* Catastrophizing. You automatically anticipate
the worst. You refuse to go out with friends for fear your pain
will act up and you'll make a fool of yourself. Or one change
in your daily routine leads you to think the day will be a disaster.
* Polarizing. You see things only as either
good or bad. There's no middle ground. You feel that you have
to be perfect or you're a failure.
* Emotionalizing. With this type of distorted
thinking, you allow your feelings to control your judgment. If
you feel stupid and boring, then you must be stupid and boring.
You can learn positive self-talk.
The process is simple, but it takes time and practice. Throughout
the day, stop and evaluate what you're thinking. Identify one
of the methods described above through journalling Try to put
a positive spin on your negative thoughts.
Start by following one simple rule: Don't say anything to yourself
that you wouldn't say to someone else. Be gentle and encouraging.
If a negative thought enters your mind, evaluate it rationally
and respond with affirmations of what is good about yourself.
Eventually, your self-talk will automatically contain less self-criticism
and more self-acceptance. Your spontaneous thoughts will become
more positive and rational.
PARC PEARL: WINTER 2005
Vol 4 Issue 16:
- DEALING WITH PAIN: PAIN
PERCEPTION: LOCUS OF CONTROL
- PARC'S AWARENESS CAMPAIGN
- CRPS INFO NIGHT with
- RSDCANADA SURVEY 2006:
Why do it?
- 5 MOST COMMON SIGNS
VS 5 MOST COMMON SYMPTOMS OF CRPS
- NEW PARC POCKET CARD:
- CAREGIVER'S ROLE IN
CRPS: GREAT ADVICE part 1
"Once other conditions have been ruled
out, a primary care practitioner can diagnose CRPS right in the
office using the clinical findings and the patient's report of symptoms".
Journal Family Practice Vol. 54
No.6 June 2005
IS THIS HAPPENING??????
From our RSDCANADA Survey so far, we know it is
The main reason family doctors do not diagnose is plain and simple:
LACK OF KNOWLEDGE ABOUT CRPS.
It is not uncommon for us to hear that someone has seen 5 doctors
or more before diagnosis.
We can change this through doctor education.
Please help by supporting our AWARENESS PROGRAMS in Canada. Give
©PARC 2005 Vol 4 Issue 16
PARC PEARL: FALL 2005 Vol
4 Issue 15:
- DEALING WITH PAIN:part 6: INJURIES WHICH DON'T HEAL!
- South Carolina RSDA Conference Aug. 26, 2005
- Cognitive Distortions (cont'd)
- Pain Assessment Quiz part 2
- PARC NEWS: CRPS INFO NIGHT NOV. 4 WITH DR G RHYDDERCH MD FRCPC.
- Managing Anger
INJURIES WHICH DON'T HEAL
One of the first signs of RSD/CRPS is a minor injury that does
not heal and pain which lasts longer than the expected healing
time e.g. a sprained ankle or fractured wrist. When the body is
injured, it naturally begins the healing process but it is also
painful. The process of inflammation is your body's response to
injury but it can get out of control and cause more pain. Inflammation
begins when the body sends signals to the injured area. The blood
flow increases to the wrist/ankle as it begins to fight infection
and repair damage. Some extra blood leaks out of the blood vessels
and causes swelling, soreness, stiffness and warmth. The blood
also sends out strong chemicals which make the area more sensitive.
Normally, inflammation in the body goes away when the injury
heals. In RSD, it is different and the nerves are affected. Inflammation
is implicated in many kinds of diseases, one of which is RSD/CRPS.
The healing process can cause pain in other ways through muscle
spasms. When this happens the body contracts muscles near the
painful area and those muscles remain tight or in spasm. Why?
The spasm itself often hurts. If these spasms are ignored, the
muscle tissues can become "glued" together. These spasms can cause
great pain if not treated. They can also cause "referred pain"
which is pain that is in another location other than the injured
area e.g. muscle spasm in the neck can cause a headache.
In addition, the healing process also causes pain when the damaged
pain nerves heal improperly. This is quite common since the nerves
heal and regrow. Often they do this in a distorted fashion and
begin to fire spontaneously sending signals to the brain for no
reason at all. Therefore, the very injury that caused the pain
in the first place, is not the cause of the continuing pain. The
pain has become "engraved upon the nervous system" and is now
An example of this is a study where pain researchers stimulated
the thalamus in the brain, the area that first receives pain signals.
Those with no history of chronic pain did not have any pain but
in chronic pain patients, the patients felt intense pain. The
pain had a memory.
In RSD, neurogenic inflammation (of the nerves) can remain, thereby
disturbing the healing process. However, the body thinks it is
still injured and sends pain signals to the brain. causing more
pain. It is like a fire alarm stuck in the "ON" position and it
can't be shut off.
The healing process can also cause pain through muscle spasms.
When this happens the body contracts muscles near the painful
area and those muscles remain tight or in spasm. Why? The spasm
itself often hurts. If these spasms are ignored, the muscle tissues
can become "glued" together. These spasms can cause great pain
if not treated. They can also cause "referred pain" which is pain
that is in another location other than the injured area e.g. muscle
spasm in the neck can cause a headache. In addition, the healing
process also causes pain when the damaged pain nerves heal improperly.
This is quite common since the nerves heal and regrow. Often they
do this in a distorted fashion and begin to fire spontaneously
sending signals to the brain for no reason at all. Therefore,
the very injury that caused the pain in the first place, is not
the cause of the continuing pain.
The pain has become "engraved upon the nervous system" and is
now chronic pain.
Source: Fishman S MD The War on Pain 2002 ©
PARC 2005 PARC PEARL Vol 4 Issue 15
PARC PEARL: SUMMER 2005 Vol 4 Issue
- Dealing with Pain part 5: Decreasing Pain
- Deep Breathing and Reducing Pain
- Why Should I Exercise?
- Letter to Ayala
- Cognitive Distortions: Part 1
- Pain News: Treating Pain
- Pain Quiz
- Cognitive Behaviour Therapy Quiz
This issue deals specifically with pain management techniques.
Spring Vol 4 Issue 13 2005
WHAT OPENS THE PAIN GATES (INCREASES
- Lack of sleep
- Stressful lifestyle
- and anxiety about pain
- Repeated trauma to the injured site
- Mentally focusing on pain
- Physical inactivity
- Improper diet
- Serotonin deficit
- Endorphin deficit
- Consuming nutrients that increase inflammation
Ask yourself how many of these items apply to you? Can you reduce
or remove any of them? Can you change any of them to reduce your
pain level ? For example, it is well known that consistent lack
of sleep will increase pain. The more pain you get, the less sleep
you get...(more in this issue).
To view card go to WHAT'S
NEW? PAGE .
Winter Vol 3 Issue 12 2004
- Dealing with Pain part 3: PAIN PATHWAYS
- Clinical Presentations & Diagnosis: Dr
S Raja, Johns Hopkins
- Role of Interventional Therapies:
Dr. Joshua Prager, SC RSD Institute
- Words from the Past: Silas Weir Mitchell 1872
- Dealing with your Doctor Part 1: OPQRST, Pain Diary
“The great art of like is sensation, to feel that we exist,
even in pain.”
George Gordon, Lord Byron
Let’s explore what happens in the body when pain is experienced.
When you cut a finger, the first sensation is the cut itself and
then the pain from the cut. This is because there are “touch”
nerves and “pain” nerves in the body and the touch nerves
send their signals more quickly to the brain. “Touch”
nerves operate at about 200 mph whereas pain signals travel at 40
mph. Chronic pain travels at 3 mph. “Touch” nerves are
well insulated and travel faster.
Naturally, when you cut your finger, you tend to rub or squeeze
it. Why? It decreases pain. The “touch” signals outrun
the “pain” signals and by the time the pain signals
arrive, there are so many “touch” signals that the pain
gates are very crowded and few pain signals get through.
What is a pain gate? This is an area composed of the substantia
gelatinosa, like jelly, which is located at the back of the spinal
cord. It is involved in the gate theory of pain, which holds that
the gate can be opened or closed so that pain signals can get in
or be kept out. Of course, we would like to keep the gate closed
so that no pain reaches the brain but this is impossible. Other
signals also get through, like touch, heat, cold and pressure and
So let’s travel to the brain via the pain gate and the spine.
When the pain signals get through the gate (the elevator doors)
they ride the elevator, the spine to the brain. Chemicals (elevator
operators) which help them travel to the brain are the neurotransmitters
substance P, NMDA or glutamate. Neurotransmitters are the biochemical
messengers that carry pain signals from one nerve cell to the next.
If you have an abundance of these substances, the pain signals have
an easier time reaching the brain. So, the idea is to control the
level of these neurotransmitters in the body.
Once the pain signals reach the brain and the “doors”
to the elevator have opened again, we reach the thalamus, the switching
station or satellite dish which decides what to do with the signals
it has received. It sends the signal to the cortex, the “thinking”
part of the brain and the “limbic” system, the emotional
brain. They compare notes and decide on a course of action.
If the pain signals are not serious, such as a small cut of the
finger, the body tells the neurotransmitter “serotonin”
to be pumped in causing the nerves to “quiet down”.
It also causes the muscles around the injured area to relax and
the blood vessels to stop constricting and start relaxing. Soon
the body returns to normal and all is well. This is the scenario
of acute pain.
However the situation of chronic pain is quite different. To explain,
let’s travel back to the cut finger and imagine that it is
a huge gash that will require stitches, and it is the worst cut
you have ever had. The body goes into overdrive and signals RED
The cortex and limbic system, in this case, tell the body to put
out the neurotransmitter “norepinephrine” (a form of
adrenaline) which stimulates the body to react. It is called the
“fight or flight” response or “stress” response.
The blood vessels constrict, the muscles tighten and the nerves
are “on edge.”
At this point, chronic pain can begin. There should be a reasonable
balance between “serotonin” and “norepinephrine”,
like the gas and the brake systems of the car. The brake, serotonin,
needs to be applied frequently to slow the car down and sometimes
the gas is used to gather much needed speed. When you are alarmed,
serotonin is needed to “close” the pain gates.
If you become more alarmed, the pain gates are likely to open up
and could “jam” open indefinitely.
Another problem that can happen at this point is the “sensitization
of the injured area”. When pain registers in the brain, it
watches the injured area through the nervous system which continues
to react. The nerves become more sensitive and can start carrying
pain signals from places that would not ordinarily cause pain. For
example, the skin around your cut finger would hurt when you touched
it even though this area was not injured.
Pain signals can also become unpredictable and travel to a “neighboring”
pain nerve which was previously not working, and make it send also
send signals without being asked. This adds to the amount of the
pain signals which are traveling through the pain gates, up the
spinal cord to the brain. When the brain receives these new signals,
it sensitizes the injured area even more and this becomes a cycle
Your body makes its own natural pain killers called endorphins,
dynorphins and enkephalins. They are ten times stronger than morphine.
They can travel to one of the pain gates in your spine and fight
the “evil” substance P which caries pain signals and
keep it from entering the gate.
If you don’t produce enough endorphins, or enough serotonin,
your body runs into more trouble. The pain signals increase in intensity,
frequency and duration.
The pain gates are jammed open causing the pain to travel freely
from the injured area to the brain and” back” again.
When this happens repeatedly, pain becomes” engraved”
upon the nervous system.
Pain becomes a permanent part of the body, a physical part of the
anatomy of your nervous system just like “memories”
in the brain. As your injury heals, this engraved pain remains.
It no longer requires the stimuli of the injury; it now has a life
of its own.Pain is no longer a symptom, it is a disease.
Source: Fishman, MD The War on Pain 2002 ©
PARC PEARL: SEPTEMBER 2004
- UP CLOSE and PERSONAL with Dr. Gary Bennett, PhD, well known
chronic pain and RSD/CRPS Researcher, Mc Gill University, Montreal,
- Upcoming RSD/CRPS research in Canada: How you can take part
- Dealing with Pain (part 3), THERAPY TRACKING SYSTEM
- San Diego RSD Conference Sept. 10-12, 2004: review
- RSDCANADA SURVEY
PARC PEARL: June
FEATURING: H.F.L. POLLETT, MD, FRCP
A lively interview
with Dr Pollett, an anesthesiologist and pain management doctor
in Nova Scotia who uses a unique, multidisciplinary approach to
treating RSD/CRPS in his pain clinic.
- Dealing with Pain part 2(series): A PLAN written by a long term
- Lectures from the Dutch International RSD Conference :
- "Spinal Cord Stimulation in patients with CRPS-1:
Long term results" by M van Kleef MD, Dept. of Anesth.
and Pain Management, AZ Maastricht
- PARC letters and positive options for RSD/CRPS
- Dealing with Pain (series) part 2:POWER TOOLS AND EXPECTATIONS
- Tectin drug trial update
"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 with excellent explanations about chronic pain,
what it is and how it works in the body. Various treatment approaches
to chronic pain are discussed. RSD/CRPS cases are also mentioned.
"The War on Pain" by Scott Fishman MD.
Harper Collins 2000 ISBN 006-019297-6 HC
To subscribe to the PARC PEARL, just contact
PARC PEARL MARCH 2004 ISSUE
- Dealing with Pain part 1(series)
- Dutch RSD conference lectures:
- "Inflammation and RSD" by Prof. Dr
- "Neurogenic Inflammation in RSD" by
F Birklein MD
- RSD/CRPS Conferences
- Ketamine Treatments
- Nerve Blocks for Neuropathic Pain by Dr H Hooshmand
A non-opioid drug in the treatment of chronic pain has been undergoing
clinical trials for several years and has finally reached Phase
III trials. In a recent study, patients showed improvement in the
third week of taking the drug. Patients assessed their own pain
levels using the VASPI scale. The maker of Prialt, Elan Corp. says
Prialt is safe and well tolerated by patients.
"Ziconotide (formerly SNX-111) selectively blocks N-type voltage-sensitive
calcium channels and may be effective in patients with pain that
is refractory to opioid therapy or those with intolerable opioid-related
adverse effects," write Peter S. Staats, MD, from Johns Hopkins
University in Baltimore, Maryland, and colleagues. "Many patients
with cancer or AIDS do not receive satisfactory pain relief from
systemic administration of opioids and become potential candidates
for intraspinal analgesia." Compared with placebo, ziconotide
was associated with significantly more adverse effects, including
somnolence, confusion, urinary incontinence, and fever, but these
were reversible with dose reduction. Prialt is a promising drug
for treating chronic pain and plans are to make it available for
review in selected centres in USA in early 2004.
Source: JAMA. 2004;291:63-70
Prialt is not yet available in Canada.
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
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
“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
“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
PARC PEARL: June
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
- 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
- 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
- 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!
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.
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. ©PARC June 2003.
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.
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.
All TEN responded by having no pain, no hyperalgesia, no allodynia
and an absence of CRPS-1 signs.
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.
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
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
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.
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?....
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: Sept.
"COMPLIMENTARY ALTERNATIVE MEDICINE:
BALANCE IS THE KEY"
by Natalie K Arndt, RN, LAc.
Excerpt from presentation at the CRSDNET July Conference
Acupuncture and Oriental medicine (Acupuncture, Chinese herbs,
TENS and Microstim units
Boosting the Parasympathetics
Epsom Salt Soaks
Emotions and Balance
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'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
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
PARC PEARL Summer 2002
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
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
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
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
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
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
"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!
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