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 ISSUE
- NATIONAL PAIN AWARENESS WEEK NOV. 1-8: Dr. Zacharias and Dr W Chindemi
- "GOING AFTER OXYCONTIN" by Willy Noiles.
- WHAT IS PARC DOING? PARC NEWS
- 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 pain.
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 PAIN
- PT TREATMENT PROTOCOL
- "TAKING 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 OF CRPS"
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
TAKING 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 on.
Read more in the summer issue...
PARC PEARL WINTER 2008
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 taking.
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
EXCERPT 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 plasticity.”
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 in pain.
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 joints.
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.
- PARC'S FALL EVENT: November 10
- PARC NEWS 2007-8
- PAIN AND PIZZA
- PAIN and PERSONALITY:Enneagrams part 1
- GOOD FATS, BAD FATS PART 3 Brain and nerve nutrients
- PAIN MYTHS
- GREAT PAIN BOOKS!
excerpt from 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 and others
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 to problems
Use anger in constructive ways i.e. be the Reformer and spearhead worthy causes
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, hysterical
Core issue: pride (being needed by others while having no needs yourself)
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 .
PARC SUMMER ISSUE 2007
- PARC'S SPRING EVENT: June 2 Toronto
- Dr David Shulman, Rothbart Pain Clinic
- PARC NEWS 2007-8: What are we doing?
- 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 1999.
To get your copy along with a free POCKET CARD, contact us at PARC.
To view card go to WHAT'S NEW? PAGE .
PARC PEARL 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 J.
- PARC NEWS: What are we doing?
- PAIN PITFALLS: Part 1 (read below)
- Good Fats, Bad Fats
- Ask Dr Charlie (Clinical Psychologist)
PAIN PITFALLS: INTRODUCTION:(page 6)
©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 extremities.
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 muscle spasms.
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 June issue.
Sources: 1. Khalsa D.S. MD The Pain Cure Warner Books 1999.
2. Balch, James F MD. Prescription for Nutritional Healing” Avery 2000
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 Edition
- Physical Therapy and Functional Restoration
- Thermography: Dr Getson (read below)
- Personal Story: Life after DCS: by Bryant Frazer
USE OF THERMOGRAPHY IN THE DIAGNOSIS OF CRPS: A PHYSICIAN’S OPINION
by Dr. P. Getson DO Pain Practitioner 2006 Vol. 16 No. 1
REVIEW 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 images.
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 earlier.
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 or hallucinating.
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
COGNITIVE 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 you.
* 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 2006
- CRPS INFO NIGHT with Dr. RHYDDERCH
- RSDCANADA SURVEY 2006: Why do it?
- 5 MOST COMMON SIGNS VS 5 MOST COMMON SYMPTOMS OF CRPS
- NEW PARC POCKET CARD: Get yours!
- CAREGIVER'S ROLE IN CRPS: GREAT ADVICE part 1
THINGS TO PONDER....
"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 not.
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 generously!
©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 chronic pain.
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 14:
- 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 PAIN)
- 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 vibration.
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 ALERT!
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 of pain.
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 2003
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, Quebec.
- 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 2004
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 RSD patient
- 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.
PARC PEARL MARCH 2004 ISSUE
- Dealing with Pain part 1(series)
- Dutch RSD conference lectures:
- "Inflammation and RSD" by Prof. Dr RJA Goris
- "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 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!
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.
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.
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 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.
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. 2002
"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, etc.)
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!
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....
"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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