WELCOME TO THE PARC!
FACEBOOK: Find PARC on Facebook as RSDCANADA: PARC. Current news and research updates are posted.
MEETING SPACE WANTED: We are looking for a meeting space for our Edmonton group. As of September 22, we do not have a space for the group. Can anyone help? Please use our Contact Us page.Thanks!
Monday November 6 is Colour the World Orange Day. It is a day to promote awarenes of CRPS in Canada. What will you do? Wear orange? Contact the media with your story? Let us know your thoughts!
September 21, 2017. EDMONTON AREA CRPS SUPPORT GROUP: The Meet and Greet will be on Friday, October 6 at 6 PM (1800 hrs).at Good Earth Cafe at 8623-112 Street in Edmonton. It is close to the University hospital and the train is nearby also. Interested people with CRPS are invite to attend.
For more information: firstname.lastname@example.org. Alicia Ellis
September 19, 2017: If you have sent us a message through our CONTACT US page and not received an answer, please check your spam folder. Our reply may be in there.
Notice of PARC's Change of Address:
As of September 29, 2017 PARC's new address will be:
PO Box 20032
St. Catharines, Ontario
(PARC is not moving, only the PO Box.) :-)
MIDWEST PAIN TREATMENT EDUCATION EXPO AUGUST 13, 2017, Northbrook IL.
"Common sense is not so common" says Dr. Turksha Hamilton ND Professor of Naturopathic Medcine at the University of Health Sciences in Lombard, IL.
DETERMINANTS OF HEALTH
by Dr. T. Hamilton ND
What is necessary for bodies and minds to function properly?
SELF CARE 101
MIND SET-MENTAL HEALTH
SUMMARY: Dr. Hamilton advises everyone to get therapy for acceptance and coping. Why? To learn how to handle life. Your identity is also important--who you are.
Hydration: Drink 8 glasses of water daily. If not, it impairs cognitive performance and can enhance pain,or people can have increased pain perception. Dehydration increases pain levels. People can perceive a higher level of pain.
Sleep: helps people heal. Less sleep creates impaired cognitive performance, increases depression, and decreases the pain threshold (more likely to feel pain).
Exercise: blood flow enhances well being, strengthens muscles and bones. It also increases lymph flow. It "takes out the trash." from your body.
Nutrition: inflammation increases if one eats poorly, there is poor cellular function as well as poor elimination (bowel movements).
Relationships: your "support team and family" plays an important part. Good relationships lower depression and stress while increasing well being. If relationships are poor, then pain increases. Keep your relationships strong!
Laughter: releases stress, releases serotonin to lower pain and improve sleep. It also boosts the immune system by releasing endorphins (body's natural painkillers). Laugh at movies! Proper breathing lowers carbon dioxide (CO2). Laughter promotes relaxation, lowers anxiety and pain.
Proper elimination increases well being, mental clarity, improves digestion and the gut microbiome (good bacteria).
*60 percent of illnesses caused by stress and stress increases pain.
*95% of doctor visits are stress related.
Take good care of yourself!
"PAY IT FORWARD PROGRAM "
If you have received a package, received a HELP LINE call, or a newsletter, someone with CRPS has donated to help you.
People donate to help other patients receive phone calls, CRPS materials,
support the HELP LINE and the website.
If you want to be part of this program you can help below.
Should you wish to donate you are welcome to do so.
To donate to PARC, please click button below.
Thank you to all the courageous patients who promoted awareness of CRPS.
You are all awesome!
June 17, 2017: 16 year old Lauren Seabrook's struggle:
June 1, 2017. Alicia Ellis is telling her story about CRPS through Alberta Health Services..
May 21: Read about CRPS and the devastating effect it has on Rachel Caplan.
Global News May 21,2017 by Emanuela Campanella
May 17, 2017: The FIGHT Project by Lauren Seabrook, a teen with CRPS:
Please watch Krista Spence's encouraging video first played at PARC's Nov. 12/16 event:
pril 18, 2017: Rachel Caplan Toronto Star:
Toronto Star April 18, 2017
Who else was interviewed? The Executive Director of PARC.
Please view Yolande Clement's successful battle with CRPS at:
CRPS: A Success Story
Yolande is also a PARC coach.
CRIMSON ROSE FUNDRAISER:
Lynn Langtry, composer and artist, has composed a wonderful song called Crimson Rose. It is available at:
Lynn says that 50% of sales will go to PARC and the rest to maintain her website.
It is also available on iTunes. Just search by title and her name.
Please visit her site:http://lynnlangtry.com
Thanks Lynn for supporting our charity!
We really appreciate it.
Restorative Yoga calms the mind and body. It is poses on the floor and deep breathing.
1. Try Jillian Pransky's Restorative Poses on You Tube. www.youtube.com
2. Rodney Yee's DVD: COMPLETE YOGA for Beginners.
Out of the 4 practices, the last one is Restorative Yoga which is very effective.
For more please visit: Gaiam
LDN:LOW DOSE NALTREXONE
Low dose naltrexone has been studied for CRPS and offers hope.
LDN lowers the inflammation levels in CRPS. (Please note that high dose naltrexone is for alcoholics.)
Low dose naltrexone lowers inflammation.
Weinstock,L.MD and Chopra P. MD: Identification and Treatment of New
Inflammatory Triggers for CRPS International Anesthesia Research Society 2015.
(Ask us for a copy.)
INTENSE PAIN SOON AFTER WRIST FRACTURE
STRONGLY PREDICTS WHO WILL DEVELOP CRPS
Recent research has found that
1 in 26 with a wrist fracture
can develop into CRPS.
The "red flag is pain greater than 5 out of 10".
Also if the patient has pain more than (or equal to) 5/10
for 3 days after surgery, suspect CRPS.
Early diagnosis is crucial.
DVD: LIVING A LIFE IN PAIN:
THE STORY OF RSD/CRPS
by Sarah Panas
The film features four CRPS patients, a CRPS doctor,
a psychologist and PARC's Executive Director.
You Tube Trailer:
Living a Life in Pain
Cost is $10 plus shipping = $13.50 in Canada
Please ask us about US and International rates.
Major credit cards will be accepted through Paypal.
PARC PEARL: Summer 2017
What is Black Cumin Seed?
TEN Foods to Fight Inflammation: from The Brain Warrior's Way by Dr Daniel C. Amen MD
"CRPS/RSD Will Not Win": A powerful story by Lauren Seabrook (age 16)
Coping Corner: "One idiot a day..." by Helen Small, Exec. Dir.
CRPS Research: "What is the sIL2R Receptor?"
Fascial Stretch Therapy
Narcotic Guidelines: Who is Affected?
The Suicide Disease? What are the facts?
Dr. Harbut's interesting biography.
"PAYING IT FORWARD" Program
Your contribution is used to help others with CRPS who have lost their way. Funds support the HELP LINE, send out packages of information, maintain the website and send newsletters to those on a low income.
The Internet may give you the research on CRPS but it is hard to interpret. When reading a research paper, please ask yourself these questions:
Who authored it and what is their reputation?
Is this paper valid and does it measure what it says it measures?
Is the conclusion valid? Are there any flaws in the data?
In the long run, is this paper important? What does it contribute to the general knowledge of CRPS?
Will this drug or treatment be available? Where? When? For example, neridronate is being hailed by the press as a "breakthrough drug for CRPS" but it is not yet available. The press is stirring up events that have not happened yet.
CRPS is very complicated and hard to research unless the authors completely understand the many elements of CRPS.
Who is doing what element of CRPS research? There are many lines of research to pursue i.e. inflammation, blood flow, nerve damage and brain issues. The hot new research line is the immune system factors and brain issues.
Our newsletter draws the big picture for you and brings together all the elements of CRPS research and important conclusions. We are very well connected with several excellent researchers.
Besides, your support is very much appreciated!
COMING Soon! A PARC FORUM is coming!
OPTION 1: Deluxe membership ($35 per year) includes 3 issues per year, PARC Alert, Ongoing Support and CRPS Self Management Program You are helping another CRPS patient get the help he/she needs and benefitting from our excellent services as well.When ready, the PARC Forum: PARC PLACE, will be at no extra cost.
OPTION 2: Newsletter only: ($25 per year) .The newsletter is published 3 times per year. It is on paper.
These memberships are tax deductible and a tax receipt will be issued.
To receive your issue of the newsletter or join as a member of our Canada wide network:
- OPTION 1: To order :Download NEWSLETTER FORM. Please mail in with payment by cheque payable to PARC.PO Box 20032, St. Catharines, ON L2M 7W7.(As of Sept. 29,2017.)
This card is the size of a credit card easily stored in a purse, wallet or pocket.
DO YOU HAVE BURNING PAIN?
HAS IT LASTED LONGER THAN THE EXPECTED HEALING TIME?
WHEN TO SUSPECT CRPS...
INSIDE TEXT: Signs and symptoms of CRPS.
PROFESSIONALS: Do you have patients recently diagnosed? Do you need cards for your patients, nurses, hospital or clinic staff?
This sleek 4"x 3 3/8"pocket card has concise CRPS information.
PATIENTS: Are you tired of explaining what RSD/CRPS is? Do your family and friends understand? Does your doctor know about it? Does the ER staff, specialist, local hospital, nurse,or physiotherapist know?
Now there is no need to explain--let the Pocket Card do it for you. Why not keep one in your wallet?
Q: HOW CAN I GET A FREE CARD?
A: Sign up as a new member with PARC. Please send your mailing address and membership fee ($35 CDN ) deluxe membership or $25 CDN (for newsletter only ) to the address below. (US and International rates available on request.)
Q: WHAT IF I ONLY WANT CARDS ?
A: To receive a quantity of cards, please tell us how many you wish and include a donation ($1 per card) inside a self-addressed envelope sent to our mailing address:
PARC POCKET CARD
c/o PARC PO BOX 21026
ST. CATHARINES, ONTARIO
CANADA L2M 7X2
As of September 29, 2017
our new address will be
PO Box 20032
St. Catharines, ON
OPTION 2 : To order Pocket Cards, online transactions through Paypal.
Proceeds go to our "Pay It Forward", Seminars and" Education Programs" for 2017.
SUPPORT GROUP OF NIAGARA(CPSN)
MEETS Second WEDNESDAY OF THE MONTH
DAY/TIME: 1:30 PM
For further information:
please contact Will Noiles: CONTACT
If coming from out of town, please verify meeting date in advance.
PARC'S WISH LIST
Please read this list and if you can help in any way, we would be very appreciative.
- volunteers for our new PARC Forum: three people with experience or enthusiasm
- sponsors for our 2017 CRPS self-managment program for patients
- volunteers to start support groups (support group kit)
- volunteers to be a CRPS Coach (Ask us.)
- volunter to help with newsletter editing: computer skills are necessary
- office supplies, gift cards for Staples
- sponsors for events
ORIGINAL STAINED GLASS ART CARDS!
WATER (Design 2 of 8)
OR DESIGN Glassworks has utilized breathtaking colors and brilliant textures of stained glass for the luminous glass art that they create. These radiant cards are awesome photos of the art glass that Pam and Oded Ravek have so lovingly created. This set of 8 original cards are blank and suitable for any occasion.
MORE STAINED GLASS ART CARDS
(Design 3 of 8)
OPTION 1: To download an order form, click here:
We are accepting online payment.
Major credit cards are accepted.
We leave this article on tihs page because it fully explains the elements of CRPS, treatments and medications.
It is written by a well known doctor who treats CRPS: Dr. David L. Shulman.
CRPS " The Mystery Disease"
Matt is a 46 year old right handed carpenter. While cutting wood the saw jumped and lacerated his left hand resulting in multiple tendon lacerations but no fracture. The pain was initially described as tearing, but after he underwent tendon repair and subsequent splinting for 3 weeks, he described the pain as, "Like my hand was in a pot of boiling water" and, "Like a thousand needles" and, "Like I'm grabbing a wire brush". His left hand took on a reddish blue appearance and was swollen and very sensitive to light touch, which could precipitate a volley of "electrical shocks". The pain spread up the forearm and also affected his shoulder but spared his elbow. He was unable to use his left hand for anything and had to protect his left hand with his right hand if he went out in a crowd. He was unable to work and had to give up his music and his sports. Sleep became sporadic and non-restorative since he would awaken frequently with sudden pain in his left upper limb. He had become quite depressed as a result of the unrelenting pain and the sudden deterioration of his circumstances. I saw him six months after his injury and he already had a cold, pale, wasted left upper extremity. He had marked allodynia which is pain elicited by light touch. He had a well-healed palmer surgical scar but the tendons distal to the scar were thickened and functionless. The fingers were fixed in a flexion contracture. There was robust hair growth of the forearm and dorsum of the hand. His nails were long and deformed since he could not tolerate attempts to trim them. However he had a normal radial pulse and immediate capillary refill to his nail beds.
Matt was first treated with Vioxx without improvement and was stopped. He was given Gabapentin which helped only a little and this was switched to Topamax with improvement. He started M-Eslon but as time went on it became less effective and he was switched to Hydromorphone 2 mg tid and Methadone for pain, 10 mg tid. For sleep he was given Cesamet 1 mg hs and for his low mood Cymbalta 60 mg qam. Three intra-venous regional Bretylium blocks were administered with improvement for only a few days at a time.
Matt's diagnosis is Complex Regional Pain Syndrome type 1 (CRPS 1) following soft tissue injury to his left hand.
Chronic, neuropathic type pain in an extremity was described as far back as the Trojan War. Sophocles play Philoctetes describes a soldier with pain like, "the lightning bolts of Jove." in his leg after a war wound. The modern description of CRPS was by a physician, Silas Weir Mitchell, who described soldiers from the American Civil War who developed neuropathic pain in their wounded extremities. He termed this agonizing pain "causalgia" and noted it was caused by direct damage to a peripheral nerve which triggered autonomic and dystrophic changes in the extremity. Causalgia is now termed CRPS type 2(1). A similar neuropathic pain syndrome with autonomic and dystrophic signs triggered by soft tissue injury or bone fracture without direct nerve injury was described in 1947 and was termed Reflex Sympathetic Dystrophy (RSD). We now refer to RSD as CRPS type 2. In this article I will describe both type 1 and type 2 CRPS together as CRPS.
CRPS is a disabling chronic pain condition of unknown etiology. (We do not know the cause.)
What distinguishes CRPS from other chronic painful conditions of a limb, is the hallmark autonomic instability and rapid onset of dystrophic changes. There is usually a history of trauma which seems to precipitate the pain. The most common precipitating event is a limb fracture, usually the wrist, treated with a cast. However many other injuries could trigger CRPS (Table 1).
Possible triggers of CRPS
Intramuscular injection of medication or illicit drugs
Crush injuries and blunt trauma
Neck or shoulder injuries
Acute traumatic carpal tunnel syndrome
Sprain, fracture, or dislocation
Carpal tunnel release
Fracture repair (Colles fracture)
Nerve compression syndromes
Possible Signs and Symptoms
The patient may complain of pain long after the healing of the injury and the character of the pain may gradually change from a post-fracture nociceptive type pain description of dull, pressure, throbbing and aching to a neuropathic type of pain, with terms such as burning, shooting, sharp, tingling, searing, cutting, tearing, lancinating, shocking and others. The pain may spread to involve the entire limb and may spread even further to involve the trunk on the side of the original injury. The patient fears using the limb and often avoids even light touch to the skin which may feel painful, a phenomenon known as "allodynia". The patient may observe that the affected limb feels hotter or colder than the unaffected limb and that the skin appears a different colour, either pale or alternatively dark red or purple or blue. There may be sweating and increased or decreased hair and nail growth of the affected limb. In time the tissues of the affected limb become dystrophic or wasted and this includes the muscles and subcutaneous tissue and the bones become osteopenic. The skin becomes thin and in conjunction with dermal oedema the skin takes on a stretched, shiny appearance. The skin may appear blue, cold and clammy, similar to the appearance of a limb in shock. The neuropathic pain sometimes manifests as pruritis and a neurodermatitis often results.
In advanced CRPS there may be a movement disorder of the affected limb with muscle weakness, paresis, dystonia, tremor or myoclonic jerks described in association with CRPS. The joints may undergo contracture and become fixed in partial flexion and the limb may become withered and useless. Other sequelae of CRPS may be visceral such as neurogenic bladder or gastroparesis.
The patient may be observed constantly protecting the affected limb so that it is not inadvertently touched by clothing or by passersby or even subjected to a wind since all these stimuli result in severe pain. In advanced cases the patient may become reclusive and isolated since all movement and touch are painful and the fear of provoking pain is greater than the need to participate in social situations. It is no wonder that these patients are labeled with social phobia or other psychiatric diagnoses.
Fortunately most patients have a milder form of the disease and do not progress to this horrific outcome. We no longer believe that patients progress inexorably through various stages of CRPS but that each patient develops certain characteristics of the disease that is unique to him/her. Thus some patients may have prominent sudomotor changes (sweating) and others no sweating but marked vasomotor changes and still others may rapidly develop dystrophic changes.
Update 2017: There are four types of CRPS: acute, chronic, warm and cold.
Vasomotor phenomena may be transient and therefore patient reports of changes in colour and temperature must be accepted even if these changes are not present at the time of the clinical examination. The diagnostic criteria of the International Association for the Study of Pain (IASP) in 1994 for CRPS takes this variability into account (table 2).
IASP definition of CRPS
Pain disproportionate to inciting event (sometimes major pain from minor injury)
Associated at some point with symptoms in at least three categories and signs in at least two categories of:
allodynia, hyperalgesia (pain)
changes in skin colour, temperature
decreased joint range of motion, motor dysfunction, trophic changes (hair nail skin)
Absence of any other condition that would otherwise account for the degree of pain and dysfunction
There are no laboratory or imaging tests that will reliably pinpoint the diagnosis of CRPS. The commonly ordered 3 phase bone scan may show delayed uptake of the radioactive tracer in approximately 50% of cases. This is a test with poor sensitivity. (It only finds blood issues 50% of the time.) The main criteria is the Budapest Criteria listed on our "What is RSD/CRPS? page." Therefore, the diagnosis remains clinical and is often not made on the first visit but only after careful follow up.
A good diet, exercise, physical and occupational therapy, and an overall healthier lifestyle all play a positive role in improving the patient's health. Cessation of smoking may be particularly helpful.
Initial therapy is directed at enabling physical therapy and rehabilitation and pain control is essential for this. Pain control will allow the patient to sleep better and will reduce fear and anxiety. The best way to achieve early and effective pain control is through pharmacotherapy.
Pharmacotherapy of CRPS should be considered according to the Canadian Guidelines for neuropathic pain (table 3)(2 )
TCA Pregabalin or Gabapentin
SNRI Topical Lidocaine
Tramadol or CR Opioid Analgesic
Fourth Line Agents
If the patient fails the medications in this algorithm he/she should probably be referred to a specialist who may consider using oral corticosteroids, bisphosphonates, photon therapy, DMSO 50% cream and N-Acetylcysteine (3). Intravenous regional Bretylium and Ketanserin have been shown to improve pain control.(3). Surgical sympathectomy and spinal cord stimulators are effective over the long term but are expensive therapies not readily accessible. Amputation is not recommended even though many patients may request it.
Once pain control is established the patient should be referred as soon as possible for physiotherapy and occupational therapy, which are the mainstays of treatment. Physiotherapy if instituted early enough can reduce the pain and vasomotor symptoms and may prevent the soft tissue and joint contractures.
The newest and most exciting therapy for refractory CRPS is the Ketamine infusion. The usual protocol is a four-hour infusion of up to 250 mg on each day of a consecutive 10 day course. The results in one study (4) were impressive with 7 of 12 patients experiencing complete pain relief for 1 year or more. Four patients remained pain free for >3 years after their second infusion.
Psychological and family support for the patient is essential. I send all my CRPS patients to PARC (5), a patient counseling, support and advocacy group based in St. Catharines. PARC holds meetings and sends out a newsletter with valuable information and provides a wallet card which explains the essentials of CRPS.
Recently studies have shown that it may be possible to prevent CRPS in the case of wrist fractures. It is likely that oral administration of 500 mg of vitamin C per day for 50 days from the date of the injury reduces the incidence of CRPS-1 in patients with wrist fractures. (2.)
Matt has tried the medications in the neuropathic pain protocol and some advanced therapies as well. He is the process of referral for Ketamine infusion.
1. Merskey H & Bogduk N Classification of chronic pain: descriptions of chronic pain syndromes and definition of terms. 2nd edition Seattle: IASP Press, 1994 with modifications of the Budapest consensus group 2004
2. Pharmacological management of chronic neuropathic pain ? consensus statement and Guidelines from the Canadian Pain Society. Moulton et al Pain Res Manag 2007; 12(1), 13 - 21
3. Evidence based guidelines for complex regional pain syndrome type Perez et al. BMC Neurology 2010, 10:20
4. Subanesthetic ketamine infusion therapy: a retrospective analysis of a novel therapeutic approach to complex regional pain syndrome. Correll GE, Maleki J, Gracely EJ, Muir JJ, Harbut RE. Pain Med. 2004 ep;5(3):263-75
5. Promoting Awareness of RSD/CRPS (PARC). Contact www.rsdcanada.org
posted with permission from the Parkhurst Exchange ©2011
by David Shulman MD FCFP CCFP DAAPM
We thank Dr. Shulman for this article and the many contributions he has made to PARC.
©2002-2017 PARC Organization