Sunday, December 18, 2011

RSD/CRPS awarenerss video.I thought carefully about posting this video as it is a little alarming. Not everyone has these symptoms or to this extent. Whilst I agree that chronic pain is very difficult to deal with I believe that all people in pain deserve respect and see no purpose served by comparing pain levels of various conditions. I believe that CRPS is treatable and am in remission for the second time from intractable, whole body CRPS.

Friday, December 09, 2011

Making a list and checking it twice - again

In the spirit of Christmas I'm happily busy preparing things for my family and friends. We live at the beach near Byron Bay so our Australian summer is a perfect time to share with those we love, great company, lazy days and good food. 

I'm in remission from CRPS now but have overdone things so I'm looking at my list as a reminder of how to look out for myself.

With CRPS/RSD I have learned to take one day at a time. Many things have helped in in my journey to wellness.
Having breaks between major flare ups is a blessing and an indication that I'm on the right path. Here are some of the things I've found to help with pain and symptoms. Click on the links to find out more.

I am a sufferer not a professional. These things work for me about which I am very thankful. If you think something may help you check first with your treating practitioners.

Tuesday, December 06, 2011

Ramachandran's mirror box explained. NOIgroup and others have variations of mirror boxes. I use a pain mirror, not a box. I use it for whole limbs, the face and the abdomen, areas for which a mirror box isn't suited.

BBC article - on mirror therapy and the brain - We know it works for CRPS/RSD pain. Now they are finding it may also help osteoarthritis pain.

Stephanie Hagerty of the BBC has a comprehensive article What phantom limbs and mirrors teach us about the brain.
Last month researchers at the University of California San Diego (UCSD) announced the results of a small pilot study which suggests that mirror therapy can help ease the pain of osteoarthritis. The article gives a good background to how mirror therapy was developed with an explanation of the possible science behind it. I encourage you to listen to the radio interview of Dr V S Ramachandran. My husband is a Vietnam veteran. In 2009 we visited Vietnam for Australia's first "in country" reunion. There we met Vietnamese vererans with missing limbs. I'm delighted to read about a program called "End the Pain" which hopes to extend mirror therapy to the estimated 300,000 amputees in Vietnam. Finally mirror therapy is seen as mainstream and not just God dam hippy crap.

Thursday, December 01, 2011

Can something as simple as vitamin c prevent the development of CRPS/RSD after orthopedic surgery?

This is of particular interest to me as had it been known at the time of my wrist fracture in 1998, this simple, inexpensive treatment could have prevented my many years of pain.

Researchers at Centre Hospitalier, Rue Marcellin Berthelot, 02 000 Laon, France found that the incidence of reflex sympathetic dystrophy was five time times lower in a group give vitamin C orally for 45 days from the start of the fracture. They considered that this supported previous observations and lent credibility to the value of vitamin C administration as a prophylactic measure to prevent the occurrence of reflex sympathetic dystrophy in patients who undergo surgical treatment of a displaced fracture of the distal radius.


In July 2007 the Journal of Bone & Joint Surgery reported that Drs Zollinger, Tuinebreijer, Breederveld and Kreis, Department of Surgery, Red Cross Hospital, Beverwijk, The Netherlands had conducted a randomized, controlled, multicenter dose-response study into whether vitamin C can prevent the development of Complex Regional Pain Syndrome in patients with wrist fractures.
The study concluded that Vitamin C reduces the prevalence of Complex Regional Pain Syndrome after wrist fractures. A daily dose of 500 mg for fifty days was recommended recommended.
  
Science Direct published recent French study which showed The effect of vitamin c in prevention of complex regional syndrome Type 1 in foot and ankle surgery.
"The study demonstrates the effectiveness of vitamin C in preventing CRPS I of the foot and ankle—a frequent complication in our control group (9.6%). The authors recommend preventive management by vitamin C."
I believe it is should be used routinely for prevention of CRPS post orthopedic surgery. Hopefully more research will be done to support the use of vitamin c to prevent development or complications of Complex Regional Pain Syndrome.

Dutch researchers' studies supported the theory that oxygen derived free radicals are possibly the mediators of mechanisms leading to some of the neurological symptoms of CRPS.

First suggested by Sudeck in 1942, Dutch researchers' studies supported the theory that oxygen derived free radicals are possibly the mediators of mechanisms leading to some of the neurological symptoms of CRPS. They found

  • high oxygen supply with tissue hypoxia in CRPS extremities;
  • a diminished oxygen availability to the skeletal muscle tissue affected by chronic CRPS;
  • and several deficiencies in the skeletal muscles of CRPS sufferers
Studies in Holland have centered around free radical scavengers as treatment for CRPS. There are many ongoing studies with DMSO, NAC in Holland.

This is supported by research in Israel serum and salivary oxidative analysis in complex regional pain syndrome.


Free radicals are atoms or groups of atoms with an odd number of electrons and can be formed when oxygen interacts with certain molecules. Once formed these highly reactive radicals can start a chain reaction. Their chief danger comes from the damage they can do when they react with important cellular components such as DNA, or the cell membrane. To prevent free radical damage the body has a defense system of antioxidants.
Antioxidants are molecules which can safely interact with free radicals and terminate the chain reaction before vital molecules are damaged. Although there are several enzyme systems within the body that scavenge free radicals, the principle micronutrient (vitamin) antioxidants are vitamin E, beta-carotene, and vitamin C. Additionally, selenium, a trace metal that is required for proper function of one of the body's antioxidant enzyme systems, is sometimes included in this category. The body cannot manufacture these micronutrients so they must be supplied in the diet.
Vitamin E : nuts, seeds, vegetable and fish oils, whole grains (esp. wheat germ), fortified cereals, and apricots.
Vitamin C : Ascorbic acid is a water soluble vitamin present in citrus fruits and juices, green peppers, cabbage, spinach, broccoli, kale, cantaloupe, kiwi, and strawberries.
Beta-carotene is a precursor to vitamin A (retinol) and is present in liver, egg yolk, milk, butter, spinach, carrots, squash, broccoli, yams, tomato, cantaloupe, peaches, and grains. (NOTE: Vitamin A has no antioxidant properties and can be quite toxic when taken in excess.)
Research now shows that we can substantially affect the level of anti-oxidants in our bodies by eating fresh fruits and vegetables.

Google "antioxidants for crps" to learn more.

Remember the research about vitamin c's ability to prevent CRPS after some orthopedic surgery!

Monday, November 28, 2011

Matthias Weinberger's Mirror Therapy Series.

Matthias Weinberger has the blog Neurotropian. He is a Physiotherapist extraordinaire in my opinion, is passionate about the new science of pain management and promotes awareness and educates in this brilliant blog. Matthias is also a very talented photographic artist. I encourage you to bookmark his site and visit often. I go back and read his posts several times as there is so much information and good sense in them.

Neurotropian blog has a series of invaluable posts about
"mirror therapy". Mirror therapy has been proven to create new neural pathways, retraining the brain, important for those with CRPS. I recommend you watch the video of Ramachandran before Mirror Box Therapy Part I.


  • Mirror Box Therapy Part I describes how easily the brain can be changed by vision. Click on rotating spiral to show you how. He presents the science of "Somatosensory maps being re-modeled so that the pain is gone (forever)" because the brain is restructured. Please note that from my observation, if pain returns as soon as you stop mirror therapy, there may be an ongoing pathology or mechanical problem which needs addressing. Note the fantastic results with Iraq veterans in Walter Reid trials.

  • Mirror Box Therapy Part II talks again of the brain's plasticity. With his gift for making the difficult seem simple Mathias helps us understand just how our brain can change in ways that benefit us.
  • Mirror Box Therapy Part III talks about the virtual body in the brain and distortion of images. In my case if I've had pain for a long time my image of my body part becomes distorted eg I become convinced that my leg is swollen. Measuring shows me that it's not but in my mind it is. Mirror therapy stops the pain and returns the image in my brain to normal. Again this section is interesting and explained in such a way that it is easy to understand.
  • Mirror Box Therapy Part IV specifically talks about CRPS and mentions the limb laterality left/right recognition problem. This is the best explanation I've found about this. In previous posts I talked about Noi Group's Recognize program. I think the cards they now have would have been much better for me as I have a big problem with recognizing left and right hands. This post is devoted to feedback from the body to the brain and is most important. I recommend you take time and read this section.
  • Mirror Box Therapy Part V has some really good links. Hubmed is brilliant. I've bookmarked a number of other links thanks to Neurotopian.
  • Mirror Box Therapy Part VI - as the expression goes "from pain to possibilities". This section is just fascinating. Read it and bookmark "Neurotopian" in your favourites. I'll be checking regularly and hope at some point there will be the opportunity to get updates by email as you can with Blogger.
  • Mirror Box Therapy Part VII covers frequently asked questions. It provides answers about side effects, lengths of sessions, where to get boxes and what to do.
  • Mirror Box Therapy Part VIII covers questions people might have such as about side effects, what to do and length of sessions, where to get a mirror box and who can help.

Friday, November 25, 2011

Pain - A disease in its own right? Professor Michael Cousins commented on Body in Mind

Dr Lorimer Moseley originally posted the topic "Is chronic pain a disease in its own right?" on the Body in Mind website. Professor Michael Cousins' comment was presented as a new post "In response to 'Is chronic pain a disease in its own right'". 
It may help you to know a little more about Professor Cousins and his work. Professor Cousins was interviewed on Catalyst in July 2009.
ABC Local Conversations with Richard Fidler interviewed Professor Cousins in June 2010.

BBC News also reported on thie topic "Pain should be a diesease in its own right."

To put this into perspective,  The International Association for the Study of Pain (IASP) in 2001 recommended the Global Adoption of the European Federation of IASP's declaration on Chronic Pain as a Major Healthcare Problem a Disease in its Own Right.
I recommend viewing this Swiss Presentation. 

Please do not take this post to mean that I believe the primary treatment for pain is medication and invasive procedures. I believe physical and new brain retraining techniques offer real and cost efective promise. However having pain declared a disease in its own right has significant implications for access to funding for much need research. As I posted recently, scientifically rigorous trials require large funding budgets. Raising the profile of Pain will allow access to more funds.

Thursday, November 24, 2011

Wednesday, November 23, 2011

Difinitive Link Library for CRPS and similar conditions.

Howard Black has a Ph.D. in Medicinal and Organic Synthetic Chemistry. On a personal level he has been dealing with Complex Regional Pain Syndrome for 15 years and is now in remission. There's a link to his story if you scroll to the bottom of the main site, Definitive Links Library for Reflex Sympathetic Dystrophy CRPS, chronic pain and similar conditions
This website is a wonderful source of up to date information. Howard also gives you the opportunity to ask a question by signing the "guest book" by clicking on the link. I encourage you to visit and if interested in latest research to click on the "newsletter" link to the left.

Howard is interested in anyone who has had remission. Scroll down through the site for a link to tell your story and help research.

Harvard Medical School - Complementary and Alternative Medicine for Pain: An Evidence-based Review

Published in November 2010 this Evidence-based Review of Complementary and Alternative Medicine for Pain: considers the literature on complementary and alternative medicine for pain, with particular emphasis on evidence-based assessments pertinent to the most common alternative therapies, including acupuncture,
herbal therapy, massage therapy, hypnosis, tai chi, and biofeedback.

The authors conclude that as "therapies are increasingly sought by patient, it is incumbent upon physicians and other health care providers to acquire some knowledge of the current state of complementary and alternative therapies for pain.

Netherlands and others study - The clinical aspects of mirror therapy in rehabilitation: a systematic review of the literature.

The study (This link is from a google search on the topic.) was publishsed in International Journal of Rehabilitation Research 34:1–13  2011 with the objective of evaluating "the clinical aspects of mirror therapy (MT) interventions after stroke, phantom limb pain and complex regional pain syndrome."

As with much written about mirror therapy, firm conclusions were not drawn and the suggestion is for more rigorous testing. Funding for research is limited and competitive. Mirror therapy is free once taught so is not finantially lucrative thus not attracting funds from those who seek to finantially benefit.

German Study on Complex Interaction of Sensory and Motor Signs and Symptoms in chronic CRPS.

Published April 2011, this Greman study of  the Complex Interaction of Sensory and Motor Signs and Symptoms in chronic CRPS  was devised to "characterize the interaction of symptoms in 118 patients. The summary concludes that "chronic CRPS is characterized by a combination of chronic ongoing as well as evoked pain, a distinct level of stress and depression, resulting in a disabled hand function even years after the impressive symptoms of acute CRPS like edema and sympathetic dysfunction subside. It suggested that "in the future enhanced efforts should be made to set up tailored treatment strategies targeting underlying pathomechanisms in order to improve long term outcome even in severe cases of CRPS."

Netherlands study on 'The safety of "pain exposure" physical thgerapy in patients with CRPS Type 1.'

In September 2010 Netherlands study on 'The safety of "pain exposure" physical thgerapy in patients with CRPS Type 1.' was published. The following is taken from the published material.

‘‘Pain exposure’’ physical therapy (PEPT) is a new treatment for patients with complex regional pain syndrome type 1 (CRPS-1) that consists of a progressive-loading exercise program and management of pain avoidance behavior without the use of specific CRPS-1 medication or analgesics. The aim of this study
was to investigate primarily whether PEPT could be applied safely in patients with CRPS-1.
The data from this study do illustrate that this type of therapy is tolerated by patients with CRPS-1.

The study was designed as a preliminary study for a controlled randomized trial and was necessary to determine possible harmful side effects. Because the current standard among many physicians and physical therapists treating CRPS used loading exercises under the ‘‘with pain, no gain’’ concept, this study was a prerequisite for larger trials. Even with the restricted number of included patients, the study was able to demonstrate that no harmful side effects exist, and the power was sufficient to demonstrate that most treatment effects are clinically relevant (MCIC > 30%) and some treatment effects are statistically significant. The clinical implication of this study is that PEPT may now be performed without restrictions with respect to safety. Further randomized clinical trials are necessary to demonstrate the superiority
of PEPT to existing treatment strategies.
This study was financially supported by a grant from the Scientific College Physical therapy (WCF) of the Royal Dutch Association of Physical Therapy, The Netherlands and there is no conflict of interest in this study.






Saturday, November 05, 2011

Meredith's story - helping her to understand RSD

Recently Meredith left this comment here. 
"Hi my name is Meredith and I have been following your blog Ive been pretty bad at keeping up, but have some really great ideas for us RSD patients, Im working on setting up a support group online since there isnt one in our town, and since its online of course anyone with RSD is welcome. I would love if you would follow me as well meredith-understandingrsd@blogspot.com I also started a page under my facebook and its getting a lot of love and positive eneregy wich is exactly what we need."

I'll post the link when Meredith lets me know that here group is up and running. I've met so many special people with chronic pain and all of them show great determination to move on with their lives. Many, like Meredith, are inspired to help others. I guess life really is what you make of it. Thank you to all who have shared their stories, endeavouiring to help others as they help themselves.

Meredith, if you read this I clicked on "follow" on your blog but the link didn't work. You could reset it in "design" in blogger.

Friday, October 14, 2011

Chronic Pain Australia website - I encourage you to visit

Chronic Pain Australia is an organisation dedicated to reducing suffering and isolation caused by chronic pain in the Australian community. One of their core aims is creating awareness that chronic pain is a condition in its own right, not a psychological condition and that it is real and costly, personally and collectively.
I suggest spending time navigating the website, in particular the Resources section where you'll find personal pain stories (you can share your own) and much more. If you have an Iphone you might like to check out this impressive application to help people manage their condition, record pain levels, medication and treatment.  Chronica Iphone app.

Thursday, October 13, 2011

Noi Group's programme Recognize now FREE in App Store

Recognize is a programme developed by NEURO ORTHOPAEDIC INSTITUTE (AUSTRALASIA)  to help train left/right discrimination as part of a comprehensive rehabilitation programme. It's available for a short time as a free application for Iphones and Ipads. It will later be available as an android application.

Thursday, October 06, 2011

New Brighton Farmers Market - keeping it simple is eating smart.



Monday, October 03, 2011

Clinical trials for CRPS/RSD

 I've just come across an inspiring blog elle est belle la seine la seine elle est belle. I encourage you to read about the author if only to discover what inspired the blog's title. I am very pleased to note that there is a trial about the Effect of Vitamin C on preventing the development of Complex Regional Pain Syndrome following Ankle Fracture.
Other trials  are listed here. 
I'm adding this blog to my CRPS?RSD Recommended Websites Link List to the right of this blog.

Saturday, October 01, 2011

Science Dirtect - How Pain Distracts The Brain

Pain demands our attention.  It is this aspect of pain which has served to protect us and ensure man's survival. Science Direct explains this well in their article How Pain Distracts The Brain.

Ulrike Bingel and colleagues at the University Medical Center Hamburg-Eppendorf published their discovery in the journal Neuron.
They used a technique in which MRI technology is used to register blood flow across regions of the brain indicating brain activity. Researchers noted that when performing to a visual task whilst enduring pain there was a "parallel impairment of accuracy in subjects' recognition of the images". Thus they know for sure that the "pain distracts the brain".

Friday, September 30, 2011

Preventing migraine for me is best as the pain triggers CRPS/RSD nerve firing.

One of my specialists advised me to try Vitamin B2 to prevent migraine. This was after I'd spent two weeks curled up in a ball with excruciating nerve firing on one side of my head. Every sound, movement, touch made it worse. I was told to lie still till the firing eased. I lost two weeks of my life in unbelievable pain.

Preventing migraine is my management strategy but sometimes I get breakthrough pain. Until a few weeks ago if I had breakthrough pain my doctor would use Yamamoto New Scalp Acupuncture to treat and stop the headache. It works with a headache gone completely within 30 minutes. Sadly my doctor had a heart attack and was unable to help me when I had a recent headache which lasted several days. This triggered nerve firing in my head. It was bad but not of the intensity I'd had before. I was anxious as I couldn't think what to do. In the past I'd been given anti epileptic drugs but I can no longer tolerate them. I take vitamin B2 to prevent migraine and I've been taking well under the recommended dose used in research. I decided to increase the dose to that suggested in the study. Whether this worked or it just stopped I can't say but the pain stopped in 48 hours. 

 If you have migraines you might be interested in this information about the research on safely preventing migraine using Vitamin B2 .

Remember to always consult with your own doctor about medical matters.

Tuesday, September 27, 2011

Wednesday, August 10, 2011

I recommend reading this elegantly simple approach to healthy eating.

Usiku of Writer's Whirlpool has written a brilliant post. He says quite simply that we have lost our connection. We don't need extensive knowledge of nutritional content to know that if it's good, whole, unprocessed natural food then it's good for us. It's catchingly called Health & Nutrition: Information Stupid. Recommened reading.

Monday, July 18, 2011

Stanford School of Medicine calling for participants in Pain Study.

Stanford School of medicine is inviting patients with chronic pain following surgery or injury to participate in a study to determine whether Botox injections result in pain relief.
This is for US residents only.

More research about distorted body image in CRPS

Richmond Stace's website Specialist Pain Physio posts current reseach about Complex Regional Pain Syndrome. This is interesting research about Impaired Hand Size Estimation in CRPS.

David Butler explains Graded Motor Imagery Part 2

David Buttler explains Graded Motor Imagery part 1

Wednesday, June 22, 2011

More evidence of problems with object orientation in patient with Complex Regional Pain Syndrome

Science Direct reports clinical notes of Gail Robinson, Helen Cohen and Andreas Goebe concerning a CRPS patient who has agnosia for object orientation.
"Agnosia for object orientation is the term for impaired knowledge of an object’s orientation despite good recognition and naming of the same misoriented object."
This seems to fit well with the work doen by NOIGROUP and their resource Recognize.



Tuesday, June 21, 2011

More research on mirror therapy for treatment of CRPS Type 1

Research in Italy by Angelo Cacchio, Elisabetta De Blasis, Vincenzo De Blasis, ,Valter Santilli, and Giorgio Spacca  was conducted to compare the effectiveness on pain and upper limb function of mirror therapy on CRPSt1 of upper limb in patients with acute stroke. The primary goals were a reduction in the visual analogue scale score of pain at rest, on movement, and brush-induced tactile allodynia. The secondary goalsts were improvement in motor function as assessed by the Wolf Motor Function Test and Motor Activity Log.

Their findings indicated that mirror therapy effectively reduces pain and enhances upper limb motor function in stroke patients with upper limb CRPSt1.

Thursday, June 09, 2011

Hand Crafted With Love - Belle's CRPS/RSD awareness site

Thought I'd share the website of a friend in the USA. Belle had a CRPS support group for quite a long time. I admire and respect those who take on the task of supporting others. Now she's combined her passion for making jewelry and turned it to creating awareness for this complex condition. As the name implies, Belle's creations are Handcrafted With Love. Belle has had CRPS for many years but says on her website,
CRPS Pain Is Inevitable; Suffering Is Optional... A good message for us all.

 

Wednesday, May 25, 2011

Deepak Chopra on Mind, Genes, Neuroplasticity & Enlightenment w/ Rudolph Tanzi, Ph. D.

Part 1       http://youtu.be/D0m4ruupgZs

Part 2       http://youtu.be/fWR91yk30LI

Saturday, May 21, 2011

Interesting newly published Pub Med study - Proprioceptive signals contribute to the sense of body ownership.

I'm interested in proprioception and body ownership since I've had several times when CRPS was an issue and I'd lost my sense of where my body parts were. One example was when one night in bed in the dark when I went to scratch my left arm with my right hand. My original injury which caused CRPS was a right colles wrist fracture. I kept hitting the bed and other places but could not locate my left arm no matter how hard I tried. I ended up turning on the light and practising looking and touching my arm until I relearned where it was. It was really wierd.

Walsh LD, Moseley GL, Taylor JL, Gandevia SC from Neuroscience Research Australia and University of New South Wales are responsible for this study, Proprioceptive signals contribute to the sense of body ownership.

Mirror Therapy in CRPS/RSD. Recommended viewing as you can clearly see the difference in range of movement when using a mirror.

Friday, May 20, 2011

Luke Parkitny's post on "Body in Mind" worth reading.

Luke Parkitny is researching some of the factors that play a role in the development of complex regional pain syndrome (CRPS). He considers that " CRPS is indeed a complex condition that may include altered inflammatory reactions, brain changes, psychosocial or other potentiating factors plus that elusive factor x."
He commends the approach of managing "suffering and disability over just treating pathology."
I recommend reading his post on "Body in Mind".

Tuesday, April 26, 2011

Lorimer Mosely posted a series on "neuroimmunology for dummies" or various other names.

In his first "mutterings" Dr Lorimer Moseley on his website, Body in Mind, raises the point that " immune mediators that are upregulated by nociceptive activation have real time effects on the way our brain works." This helps to explain why people with chronic pain might feel they can't think straight.

 Part 1, which follows the introductory post, discusses the immune system and learning and memory -  the role of  T cells and T cells derived IL-4. Lorimer points out that "thinking increases T cells" in particular those T cells which can  produce an anti-inflammatory cytokines. He relates some evidence from experiments and poses an interesting question relating to T cell, inflammation and chronic pain.

Part 2 moves on to the role of inflammatory cytokines in particular IL-1, IL-6 and TNF-a. It seems that
"learning in a fear paradigm increases IL-1 manufacture which  induces an inflammatory-like process, at least in the hippocampus." Interestingly Lorimer says IL-1 can also facilitate learning and critically all of the data on IL-1 involves spatial memory tasks, which are thought to rely on hippocampus function. Without hippocampus function he says dosing with IL-1 has no affect. Further into this post it is indicated that  IL-6 production seems to be associated with improved memory but there is more to this IL-6 (possible implications for surgery?) (Has this anything to do with the Netherland's research in prevention of development of CRPS post surgery). Finally Dr Mosely goes on to talk about prostaglandins which are said to enhance spacial learning. He finally makes the point that the interconnectiveness of all these things and implications is far from simple or straight forward.

Part 3 goes on to discuss the immune system in neuroplasticity. Dr Moseley first discusses some research in this area and then makes the point, "the role of IL-1 is not just limited to the hippocampus and to spatial and related memory formations. IL-1 expression is associated with LTP in the dorsal horn, specifically at spinal nociceptors – the spinal projection of C-fibres". He speculates about a possible role of IL-6 in switching off LTP. He talks about a possible "window of opportunity" time frame for IL-6 to be used to
reduce the likelihood of LTP in the nociceptive system after acute injury, or in the circuits that subserve post traumatic stress syndrome.
This is a fascinating series of posts, most of which I don't pretend to grasp. However what is abundantly clear is that funding is vital to keep our great minds of science working in an enviroment that encourages questioning and embraces a quest for answers. I recommend this series of posts on Body in Mind.

Saturday, April 16, 2011

Pain and the immune system - a really interesting article.

Dr Nancy Sajben writes about the activation of glia and the immune system in her article "Pain and the immune system" This article fits neatly with my post about a promising new treatment for CRPS/RSD.

Dr Sajben says that the study of glia is early days but shows promise for development of drugs that can "distinguish activated glia for targeted treatment, new methods of visualizing glia, nefunds for research in thew sites for possible medicines and nanotechnology to deliver medication directly to the inflammation."

She also mentions the very real need for research in the area of pain in the USA. We have a similar problem here with reports recently of cuts to science.





Monday, April 11, 2011

Re my last post - UK Scientists under Dr Andreas Goebel find promising new treatment for CRPS/RSD.

Unfortunately my last post isn't showing properly in emails. Please click this link to see the post fully. I tried to fix this but was unable to do so. My appologies.

jeisea

UK Scientists under Dr Andreas Goebel find promising new treatment for CRPS/RSD.

Andreas Goebel is a Senior Lecturer at the University of Liverpool, and Consultant in Pain Medicine at the Liverpool Walton Centre Hospital, one of the largest pain teams in the UK.

A small but significant randomized, double-blind, placebo-controlled crossover trial has shown that treating the immune system of patients with CRPS/RSD can significantly relieve pain. 
The study, published in the February 2010 issue of the journal Annals of Internal Medicine, found that a single, low dose infusion of intravenous immunoglobulin (IVIG) significantly reduced pain in just under 50 percent of patients treated, with few adverse effects

In unresolved CRPS of more than a year (nCRPS) they question whether there is an inflammatory or autoimmune condition. They think that nCRPS is an inflammatory or autoimmune condition, at least in some cases. In separate laboratory studies, the researchers and others have since discovered that many patients with nCRPS have antibodies directed against their own nerves (=’autoantibodies’) suggesting that CRPS could be ‘autoimmune’.

Research has shown that the affected limb's representation in the brain changes with nCRPS. Because of the described changes in the brain and the success of ‘brain training’, ( Lorimer Moseley, mirror therapy, Professor Minh Zhuo links ) people have started to think that whatever biological cause initially elicits CRPS is perhaps not so important later – that nCRPS is essentially sustained by the brain. However Dr Goebel's research suggests that this may not be the case. I don't quite agree with this. I don't think this conclusion follows logically on. However I have no training or knowledge other than my own observation.

Dr Goebel says,  
"there is something odd about our patients’ responses to IVIG: most patients respond to unusually low doses (0.5g/kg), and they respond much quicker than people suffering from other IVIG-responsive conditions. Equally unusual is that our patients very likely do not respond to treatment with steroids, the panacea of things going wrong with the immune system. I would not be surprised if the way by which the immune system causes CRPS is different from that by which is causes other conditions."
He asks if brain retraining can override the immunological processes in some patients. Moseley's research suggests this is so.

These are now my ovservations for what they are worth. Because I have had CRPS and have had remission twice after more than 10 years of constant whole body pain and symptoms I have made observations along the way.


  • Whether it is a pre existing inflammation or an inflammatory response we know that something associated with this triggers CRPS.
  • Dr Andreas Goebel's research suggests that treating the immune system can reduce pain. This fits neatly with Dutch research.
  • Mirror Therapy has worked for me to reduce both pain and symptoms of CRPS and also other pain
  • From my observation of my own response brain retraining reduces pain and symptoms of CRPS (and other pain)

  • It appears to me that much of what we do, think etc can be shown by fMRI to change the brain. No matter what method you use (brain retraining techniques, medication, vitamins, surgery that reduce local symptoms etc) a change is produced in the body. This change produces (as I understand it) a change in the brain.  Isn't it true that as change affects the brain, then at the time of an inciting event that the brain would change. I believe it is time we stopped measuring the change and just conclude that change in the brain is a fact. This is an exciting development in my opinion as it would seem that we are able to effect beneficial changes to our well being by doing, thinking etc things that we now know to produce beneficial brain changes. This change can also be produced, I think, by many means, such as physical exercises, thought training, meditation, taking medicine, immuno suppressants, vitamins etc. I suspect anything that elicits a body response may be shown to change the brain.
 I have no qualifications and no training in this area so I'm aware what I've written here is quite simplistic. However it appears to me that, in general, the least invasive, least likely to cause side effects method of treatment would be the most desirable or the method proven to produce greatest benefit for least cost, financially and physically. I hope now and into the future these dedicated researchers get adequate funding to keep asking questions and searching for answers.

Thursday, April 07, 2011

NOI Group calling for volunteers.

A team consisting of Jane Bowering - physiotherapy honours student at the University of South Australia, Ian Fulton (MAppSc) and Lorimer Moseley (PhD) from the School of Health Sciences at the University of South Australia, David Butler (EdD) from the Neuro Orthopaedic Institute in Adelaide, and Halton Stewart - software research and development have come together to conduct a research project about back laterality.

The research hopes to answer the question:
Are the accuracy and response times for a person to judge whether a pictured model has their trunk turned or flexed to the left or right altered in people with a low back pain?

 Contact: Ian Fulton - Ian.Fulton@unisa.edu.au

Sunday, April 03, 2011

Neurotropian on Mirror Therapy - brilliant series of post from Matthias Weinberger

Matthias Weinberger has the blog Neurotropian. He is a Physiotherapist extraordinaire in my opinion, is passionate about the new science of pain management and promotes awareness and educates in this brilliant blog. Matthias is also a very talented photographic artist. I encourage you to bookmark his site and visit often. I go back and read his posts several times as there is so much information and good sense in them.

Neurotropian blog has a series of invaluable posts about
"mirror therapy". Mirror therapy has been proven to create new neural pathways, retraining the brain, important for those with CRPS. I recommend you watch the video of Ramachandran before Mirror Box Therapy Part I.


  • Mirror Box Therapy Part I describes how easily the brain can be changed by vision. Click on rotating spiral to show you how. He presents the science of "Somatosensory maps being re-modeled so that the pain is gone (forever)" because the brain is restructured. Please note that from my observation, if pain returns as soon as you stop mirror therapy, there may be an ongoing pathology or mechanical problem which needs addressing. Note the fantastic results with Iraq veterans in Walter Reid trials.

  • Mirror Box Therapy Part II talks again of the brain's plasticity. With his gift for making the difficult seem simple Mathias helps us understand just how our brain can change in ways that benefit us.
  • Mirror Box Therapy Part III talks about the virtual body in the brain and distortion of images. In my case if I've had pain for a long time my image of my body part becomes distorted eg I become convinced that my leg is swollen. Measuring shows me that it's not but in my mind it is. Mirror therapy stops the pain and returns the image in my brain to normal. Again this section is interesting and explained in such a way that it is easy to understand.
  • Mirror Box Therapy Part IV specifically talks about CRPS and mentions the limb laterality left/right recognition problem. This is the best explanation I've found about this. In previous posts I talked about Noi Group's Recognize program. I think the cards they now have would have been much better for me as I have a big problem with recognizing left and right hands. This post is devoted to feedback from the body to the brain and is most important. I recommend you take time and read this section.
  • Mirror Box Therapy Part V has some really good links. Hubmed is brilliant. I've bookmarked a number of other links thanks to Neurotopian.
  • Mirror Box Therapy Part VI - as the expression goes "from pain to possibilities". This section is just fascinating. Read it and bookmark "Neurotopian" in your favourites. I'll be checking regularly and hope at some point there will be the opportunity to get updates by email as you can with Blogger.
  • Mirror Box Therapy Part VII covers frequently asked questions. It provides answers about side effects, lengths of sessions, where to get boxes and what to do.

Saturday, April 02, 2011

Mirror Therapy Case Study


Matthias Weinberger of Neurotropian posted this video. He has a brillliant series of posts on this topic on his blog. Recommended.

Mirror Therapy

Matthias Weinberger of Neurotropian posted this video. He has a brillliant series of posts on this topic on his blog. Recommended.

Saturday, March 12, 2011

CRPS/RSD toolkit

I just came across this item on sale at Amazon. The author is said to be the US Government. I haven't seen the toolkit so can't actually recommend but if it is as described and is up to date then it could be a great help to those dealing with Complex Regional Pain Syndrome, both for themselves and in helping to explain to others.

It is described as  a "Comprehensive Medical Encyclopedia with Treatment Options, Clinical Data, and Practical Information (Two CD-ROM Set)".


Friday, February 11, 2011

Great website about pain, pain management and research. Dougie Natusch's explaination of CRPS is well worth watching.

The Pain Community Centre site has been developed by Cardiff University with contributions from key opinion leaders across the UK. It is aimed at all those who want to enhance their knowledge and expertise in the management of pain, including our MSc Pain Management alumni, current students and faculty. They say that their "aim is to foster and support a community who want to improve the lives of those suffering pain and we welcome your advice, help and support in developing the community further."

In this video Dougie Natusch is a pain consultant in South Devon NHS. He explains the signs and symptoms associated with the Bruehl criteria used to diagnose the syndrome of Complex Regional Pain Syndrome (CRPS), the epidemiology, natural history, pathiophysiological theories of CRPS and a detailed examination of the evidence supporting the treatments and therapies applied to those theories.
Thanks to Diane Jacobs for tweeting about this very informative site.

Wednesday, February 02, 2011

Take care. Be as safe as you can North Queensland as the most catastrophic storm ever approaches.

Just two months ago my husband and I took our caravan north as far as Cape Tribulation. We spent a blissful week in Cairns bird watching and snorkling on the Great Barrier Reef. We took our time as we passed through or stayed at many of the little and bigger places along the way. The very special lady who looked after Doc the dog while we spent the day at the reef, we hope you are safe. The many folk who live on the road, we hope you got out in time. Caravans don't survive 300 kilometer/hour  winds.

I see on the internet and TV that you have prepared well so all I can say is the thoughts and prayers of all of us are with you now as Severe Tropical Cyclone Yasi, upgraded to category five this morning and likely to be "more life-threatening" than any storm seen in Australia in living memory heads your way.

Sunday, January 23, 2011

Some suggestions for those dealing with winter pain.

The UK Telegraph recently quoted Dr Nick Fraser, consultant in pain management at the BMI Alexandra Hospital in Cheshire as saying, “The low meteorological pressure in winter has a physical impact on our joints, compressing them and making movement more painful. "

In journalist Victoria Lambert's Telegraph article, Breaking the pain barrier 
Dr Fraser offers some practical suggestions of self managing pain.

Saturday, January 22, 2011

New finding - a possible cure for chronic pain?

Diane Jacob highly regarded Canadian Physiotherapist posted on twitter  about this finding that could lead to a possible cure for chronic pain.

The University of Toronto's neuroscientific researcher, Professor Min Zhuo, had the department's finding published in the journal Science. Professor Zhuo is chief editor of Molecular Pain (Molecular Pain considers manuscripts in pain research at the cellular, subcellular and molecular levels providing a forum for molecular pain scientists to communicate their research findings.) 

This study addresses the maintenance of plastic changes related to chronic pain. It is known that injury caused by peripheral inflammation, nerve ligation or amputation causes long-term enhancement of neuronal activity in the fore brain region called anterior cingulate cortex (ACC).

The Toronto research explores the role that a particular protein (kinase M zeta - PKMĪ¶) plays in storing “memories” of pain and therefore enhancing the sensation of pain. Blocking the effect of this protein has the effect of  blocking behavioral sensitization and nerve injury related to chronic pain.

Understanding brain plasticity and the part it plays in pain has been used for a while now in creating effective brain retraining treatments such as mirror therapy for pain. Professor Zhuo's work is a new area of research utilizing this understanding of brain plasticity that has potential for effective new treatments.

Thursday, January 20, 2011

HTCwP's post on Best Information about Brain Retraining Treatments.

How To Cope with Pain blog has a wealth of information for those dealing with chronic pain. At present the doctor has posted a series of links about Brain Retraining Treatments.
Other topics covered in the How To Cope with Pain Blog include Medications for Pain, Pain Management Skills and Family issues. I feel confident recommending this website as it's written by a doctor whose speciality is pain management and whose interests lie in the latest developments in research in this area.

Monday, January 10, 2011

"The Tell Tale Brain" new book by Ramachandran

Eminent neuro-scientist, Vilayanur S. Ramachandran,  is the Director of the Center for Brain and Cognition, Professor in the Psychology Department and Neurosciences Programme at the University of California, San Diego, and Adjunct Professor of Biology at the Salk Institute for Biological Studies.He has recently published this new book, The Tell Tale Brain - Unlocking the Mystery of Human nature.  The Tell-Tale Brain: A Neuroscientist's Quest for What Makes Us Human

Friday, January 07, 2011

Update on current trials for CRPS/RSD.

Pain Exposure Physical Therapy (PEPT) Versus CBO in Patients With Complex Regional Pain Syndrome Type I (CRPS-1)
Condition: Complex Regional Pain Syndrome, Type I
Interventions: Procedure: PEPT;   Procedure: CBO standard

Study of Proteins Associated With Complex Regional Pain Syndrome
Conditions: Complex Regional Pain Syndromes;   Healthy
Intervention:
Effect of Delta-9-Tetrahydrocannabinol on the Prevention of Chronic Pain in Patients With Acute CRPS (ETIC-Study)
Conditions: Complex Regional Pain Syndromes;   CRPS
Intervention: Drug: Delta9-Tetrahydrocannabinol
Use of Compression Glove to Prevent Complications After Distal Radius Fractures: a Randomized Controlled Trial
Conditions: Post-traumatic Carpal Tunnel Syndrome;   Complex Regional Pain Syndrome;   Edema
Intervention: Device: Compression glove
Analysis of Photoplethysmographic Signal in Lumbar Sympathetic Block
Condition: Complex Regional Pain Syndrome
Intervention: Procedure: lumbar sympathetic block
Neurotropin to Treat Chronic Neuropathic Pain
Conditions: CRPS-II (Causalgia);   CRPS-I Reflex Sympathetic Dystrophy
Intervention: Drug: Neurotropin
Evaluation and Diagnosis of People With Pain and Fatigue Syndromes
Conditions: Fatigue;   Fibromyalgia;   Pain;   Complex Regional Pain Syndrome;   Reflex Sympathetic Dystrophy
Intervention:
Regional Anesthesia Military Battlefield Pain Outcomes Study
Conditions: Anxiety Disorders;   Complex Regional Pain Syndrome Type II;   Depressive Disorders;   Post-Traumatic Stress Disorder;   Substance Abuse
Intervention: Procedure: Regional Anesthesia
Peer Mentorship: An Intervention To Promote Effective Pain Self-Management In Adolescents
Conditions: Irritable Bowel Syndrome (IBS);   Functional Abdominal Pain;   Fibromyalgia;   Complex Regional Pain Syndrome (CRPS);   Myofacial Pain;   Chronic Daily Headaches;   Migraine Headaches;   Chronic Pain
Intervention: Behavioral: Mentorship
Susceptibility to Chronic Post-Traumatic Extremity Pain
Condition: Chronic Pain
Intervention:
Transcranial Magnetic Stimulation (TMS) Effects on Pain Perception
Conditions: Pain;   Trigeminal Neuralgia;   Neuropathic Pain
Interventions: Device: laboratory pain assessment;   Procedure: transcranial magnetic stimulation
Effect of an Educational Intervention on Cardiac Patients' Participation Rate in Cardiac Rehabilitation Programs
Condition: Coronary Artery Disease
Intervention: Behavioral: Increasing awareness to importance and availability of CRP
Effects of Vaporized Marijuana on Neuropathic Pain
Conditions: Neuropathic Pain;   Reflex Sympathetic Dystrophy;   Peripheral Neuropathy;   Post-herpetic Neuralgia;   Post Stroke Pain;   Spinal Cord Injury;   Multiple Sclerosis
Intervention: Drug: Cannabis
Glutamic Acid in Reducing Nerve Damage Caused by Vincristine in Young Patients Receiving Vincristine for Wilms' Tumor, Rhabdomyosarcoma, Acute Lymphoblastic Leukemia, or Non-Hodgkin's Lymphoma
Conditions: Kidney Cancer;   Leukemia;   Lymphoma;   Neurotoxicity;   Peripheral Neuropathy;   Sarcoma
Interventions: Dietary Supplement: glutamic acid;   Other: placebo
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