crps/rsd a better life

Tailing Trout at Little Pine Lagoon this morning.

2012-11-05T13:44:00.001+11:00

Only a light northerly blowing as I fished Tailers Shore.
Trout were tailing but illusive. Two other anglers landed fish, one a good 21/2lb. The rest of us (and there were many) just enjoyed the magnificent day.

Howard Black's September newsletter focuses particularly on research regarding drug treatments for CRPS/RSD. Recommended.

2012-09-14T17:08:00.000+10:00

As usual Howard Black's newsletters are compelling reading. September 2012's offering is particularly important as there has been so much recent interest in the opioids and there relevance for treatment of chronic pain syndromes. Of significance to me is the research concerning Tramadol. The first dose I took worked like a miracle but, although it is supposed to be non addictive, I developed a tolerance of the drug very quickly and after three weeks my body withdrew from it. For an horrific 30 hours I shook, ached almost unbearably etc. This was many years ago before medication became no longer an option. I agree with Howard's comment that it is surprising that it's not a controlled substance in some countries.

I encourage you to also read the comprehensive section on RSD Drugs and Treatments.

It pays to remember that the brain drives the pain message no matter what the cause. Treating the cause instead of the symptoms seems to me a more logical way to go. Much food for thought again here Howard.

Consequences of the inflamed brain and its relation to chronic pain.

2012-08-19T15:59:00.002+10:00

Steven F. Maier, Ph.D. and Linda R. Watkins, Ph.D., University of Colorado at Boulder report on Consequences of the inflamed brain.

Inflammation in the body can lead to inflammation in the brain. Inflammation is part of the immune system’s response to defend you. If the acute inflammatory response goes on too long eg more than a few days, it can lead to outcomes that nature did not intend. This could lead to "cognitive impairment instead of brief memory disruption, depression instead of reduced mood, fatigue instead of inactivity, and chronic pain instead of acute pain." "That is, physiology can become pathology when a set of processes designed to be relatively brief becomes prolonged."

Peripheral inflammation is highly complex and involves many immune cells and their products. At present our existing anti-inflammatory drugs often target only one of these. Hopefully studies such as this will lead to the development of more effective anti-inflammatories which better target the these complex mediators of inflammation.

NOI Group "Explain Pain" now available as an ebook.

2012-08-17T13:42:00.000+10:00

Noi Group has just made their highly regarded book, "Explain Pain" available as an ebook. Written by Dr David Butler and Dr Lorimer Moseley "Explain Pain aims to give clinicians and people in pain the power to challenge pain and to consider new models for viewing what happens during pain."

Oxygen, or lack of oxygen is involved in chronic pain pathways.

2012-08-17T13:17:00.003+10:00

CRPSUK July Update about the Role of Oxidative Stress in Complex regional Pain Syndrome addressed the question of "whether there is a potential role for Nrf2 (activated by pharmacological or nutritional activators) in alleviating the clinical features of CRPS or preventing its progression." Nrf2 induces the expression of various genes including those that encode for several antioxidant enzymes, and it may play a physiological role in the regulation of oxidative stress . Investigational drugs that target NFE2L2 or Nrf2 are of interest as potential therapeutic interventions for oxidative-stress related pathologies.

Oxygen, or lack of oxygen is involved in chronic pain pathways. Substance p is one of many neurotransmitters involved in clinical pain syndromes such as Complex Regional Pain Syndrome. Neurotransmitters transmit information across synapses. When released neurotransmitters either help or hinder electrical impulses along nerve fibers.

Substance p's relationship with oxygen deficit is well known. Oxygen deficit triggers the release of substance p. Experiments have shown that decreasing tissue oxygen concentrations increases release of substance p. The amount of substance p is relative to the level of hypoxia or put simply, the lower the amount of oxygen, the higher the amount of substance p.

It is already known that tissue hypoxia and an increase in skin lactate levels occur in Complex Regional Pain Syndrome. Oxygen free radical scavengers (or antioxidants) such as vitamin C reduce the pain of CRPS and bring about local oxygen homeostasis, inhibiting the release of substance p. Topical capsaicin cream (made from chilies) inhibits the release of substance p by increasing oxygen delivery. This, in essence, is merely a simplified explanation. Dr Majid Ali's Oxygen view of pain explains this well.

http://www.majidali.com/the_oxygen_view_of_pain.htm

Dr Majid Ali recommends what he calls limbic breathing which he describes as a "vigorous type of breathing with a long out breath". My physiotherapist and my intergrative medicine doctor also recommend a the type of breathing where the out breath is longer or twice as long as the in breath. This type of breathing, I believe, activates the parasympathetic nervous system bringing about a sense of calm and thus helping us to better cope with pain. Now I also realize that this style of breathing has the added benefit of encouraging increased oxygen intake.

For chronic pain sufferers it's important to remember to breathe.

New Graded Motor Imagery Website

2012-08-10T18:09:00.001+10:00

NOIGROUP has a new Graded Motor Imagery Website. It's a further resource to support the
Graded Motor Imagery Handbook that was launched this year.

Could a simple seed hold promise for treatment of CRPS?

2012-08-10T17:45:00.001+10:00

My last post mentioned oxidative stress as a component of Complex Regional Pain Syndrome. Antioxidants deal with oxidative stress. Research into fenugreek, a traditional food used in Ayuvedic medicine, has shown it to be a powerful antioxidant. I haven't found specific research about its use for treating CRPS but suspect that its efficacy may hold promise. I am not recommending adding it to your diet. As with many things fenugreek consumption may have side effects including changing the effect of medication so seek medical advice.

Georgia Health Sciences University's Dr Bobby Thomas and colleagues reported that a powerful class of antioxidants may be a potent treatment for Parkinson's Disease. "A class of antioxidants called synthetic triterpenoids blocked development of Parkinson’s in an animal model that develops the disease in a handful of days". They used "the drugs to bolster Nrf2, a natural antioxidant and inflammation fighter." "They are now looking at the impact of synthetic triterpenoids in an animal model genetically programmed to acquire the disease more slowly, as humans do."

Shang Mingying;Tezuka Y;Cai Shaoqing, et al. (Department of Pharmacognosy, Beijing University of Medical Sciences, Beijing 100083) reported on Studies on Triterpenoids from Common Fenugreek(Trigonella foenum-graecum). Seven triterpenoids were isolated for the first time from the ethanol extract of seed of common fenugreek.

Fenugreek shows antioxidant and anti-inflammatory potential according to US and Arabic researchers.
The Journal of Food Biochemestry reported on this study showing the antioxidant effect of fenugreek.
Medical News Now with more about fenugreek from University of Queensland School of Medicine.

CRPS research update from Richard Stace of CRPS UK

2012-08-09T17:59:00.000+10:00

Richmond Stace is a physiotherapist with a special interest in Complex Regional Pain Syndrome. He created his website to share current research on this hard to treat condition. Of particular interest in his July Update is the role of oxidative stress in triggering and its involvement in clinical symptoms of CRPS. I follow Richmond's posts via email subscription and appreciate his efforts to keep the CRPS community informed.

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.

2012-06-11T14:49:00.000+10:00

I've been using a large mirror for single sized lower abdominal pain caused by adhesions and infammatory bowel pain in a similar manner to what you have shown. I massage and prod the area on my good side while watching the mirror image, and yes it does work. The abdominal pain had triggered CRPS symptoms in the leg of the same side so I used the large mirror for that as well. The CRPS symptoms are settling and the abdominal pain eased. The abdominal pain will return. My goal is managing the pain now I know the cause.

"The Graded Motor Imagery Handbook" a much anticipated addition to NOI Group's "Explain Pain".

2012-05-10T17:49:00.000+10:00

This new Noigroup publication is born of a firm conviction that, as Lorimer Moseley says, "people in pain do better if they are given the resources to master their situation". To this end The Graded Motor Imagery Handbook builds on and extends much further the knowledge that Explain Pain began. A persistent theme is that treatment requires patience and persistence, courage and commitment. I have to agree with that. Lorimer sums this up beautifully on page 37.

The book is divided into five sections - knowledge, background, treatment, stories and tool boxes.
David Butler in the first section tells us about this exciting new era in rehabilitation powered by the neuroscience revolution of which Graded Motor Imagery is an important part. David explodes some myths and builds on the plain common sense of Explain Pain. He offers suggestions and encouragement, including encouragement to share your experience and thoughts. This open mindedness is refreshing.
David explains that Graded Motor Imagery (GMI), unlike a program is not preset. It's a series of novel treatment strategies which remind us that representation of body in the brain should be considered in all patients. Importantly he says that patients cannot be just passive recipients of treatment. They need to self manage and understand that gaining knowledge is part of treatment - knowledge is power - knowledge can be therapy. "If you have knowledge of GMI you have skills to know why it hurts so much today and how to deal with it."

In the second section of The Graded Motor Imagery Handbook Lorimer Moseley gives us the science underpinning the concept of Graded Motor Imagery. He also explains such things as delayed reaction time in left/right hand judgements and why sometimes even imagined movements make some feel pain. He gives a great explanation of possible mechanism of spreading pain which can manifest as imprecise movements or dystonia. Lorimer explains the pattern of primary sensory cortex (outermost layer of brain) activation caused by stimulating different points on the skin. Using this method of brain activation a representation of the body in the brain has been drawn called sensory humunculus (humunculus means little man). Page 27 has a simplified 2D illustration of the body in the brain. The picture looks grotesque, out of shape. This is due to the richness of innervation of different body areas. As I actually gained remission finally twice from Yamamoto New Scalp Acupuncture I was excited to learn that it utilizes this same sensory homunculus. Curiouser and curiouser.

Interestingly Dr Moseley (page 50) describes comparison between patients who used imaginary and mirror therapy with those who used the three step Graded Motor Imagery approach (that is left/right judgements followed by imagined movements and then mirror therapy). In his results with ungraded motor imagery "patients tended to get worse in those phases but improved when left/right judgements were used and then further improved when the next steps were followed. " I'm putting this here because what I like about this book is that the authors don't pretend to know it all. I did not have the benefit of left/right judgement before I began mirror work, nor did I know anything about imagined movements as therapy. I read about mirror therapy, worked out what might work and experimented. With persistence, a very little and often over a long period I improved. I suspect that keeping the training very short prevented worsening of symptoms as described. The important message here is that beyond doubt, pain can be reduced by brain retraining methods.

Tim Beames authors the third and no less important section on treatment. He goes much further into the practical aspects of treatment, the stages, adaptive techniques, how to use Recognise, implicit and explicit motor imagery and on to mirror therapy This is a valuable section for clinicians as many examples are given. Telling photos of mirror therapy in practice will be an asset for both therapists and patients. There's a great "how to mirror therapy" table on page 89. Each section is clearly summarized and on page 92, Timothy brings it all together and encourages us to be creative and "not be satisfied with just managing pain." I like his attitude.

David takes the fourth section to a new level. I like the way he cuts to the chase, a no nonsense approach explaining how stories and metaphors can "get us through". He has a great knack of keeping it simple and really getting his message across. I like too the analogy on page 114 of our brain being "our own drug cabinet". I agree with what he says at the end, "Basically, knowledge is the greatest pain liberator of all. The key is in your hands."

Now to the final section written by Thomas Giles. I'll call him Tom. Tom describes himself as the nerdy one. It's one thing to tell us what, but he's the one who shows us how to access and use the tools to make it work. It's refreshing to see this depth of information and practical support. From system requirements and connecting to Recognize to making your own resources, Tom explains it all simply and logically. He encourages us to share our ideas. Just contact NOI Group. Many people with CRPS contact me asking where they can find out more, who can help them, where there's someone in their area. Now I can suggest they go to their local clinician. If the clinician/physical therapist is unfamiliar with Graded Motor Imagery this link and this wonderful book will provide the answers. Ignorance of something new isn't a problem. It's an opportunity.

At the end of his section Dr Moseley asks "Does Graded Motor Imagery work?" I'm reviewing this book because I know this works. I believe The Graded Motor Imagery Handbook is a great resource for patients but I consider it is a must for those who treat people in pain. I add my encouragement for clinicians who use it to document what you do and add to the growing body of evidence by sharing your results and experience. This book gets a big thumbs up from me.

NOI Group has a new app "recognise feet" free for this week only. You can now buy this app for $8.99.

2012-03-23T22:10:00.002+11:00

I follow @noigrooup on twitter. They tweeted that their new iphone/ipad app "recognise feet" is free to download this week. Just search "recognise feet" in the itunes shop. Even at $8.99 it's great value. Those who don't have an iphone can do recognise feet on line at Noi Group.

Two interesting series from How To Cope with Pain.

2012-03-23T21:53:00.000+11:00

HTCwP's post in January and February 2012 were challenging us to give. These posts are timely when you consider what we are now learning about neuroplasticity. We all know we feel good when we are charitable but now it seems that the brain also changes in a positive way when we give. Harbaugh, Mayr and Burghat reported on
Neural Responses to Taxation and Voluntary Giving Reveal Motives for Charitable Donations.
Although this research applies to financial giving, one would expect that the same applies to other forms of giving.

The other series for March 2012 is Practising Daily Gratitude. Here's a great article about gratitude and neuroscience Etiquette: Daily Gratitude Improves Our Brain Function.
It seems the Professor who has How To Cope With Pain website is helping us to help ourselves in simple positive ways.

How To Cope with Pain website asks for your response.

2012-03-14T18:02:00.001+11:00

Professor of Pain Medicine who has the How to Cope with Pain website posted a comment here today. I intend to comment in reply. I know HTCwP would appreciate others comments.

Hi jeisea
There's a comment on my blog today about using mirror therapy when CRPS is full body, and if there's any problem using mirror therapy when a patient is on opiates. I'd love your (and any of your readers') thoughts, if you have a moment. Click here to comment.
Thanks!
How to Cope with Pain

I only discovered mirror therapy after I was told I could no longer tolerate drugs. As you are probably aware. I consider that being told drugs were not an option ended up a blessing (although I initially felt abandoned by the medical profession). I was forced to stop expecting people to "treat" me and had to start working things out for my self. This was hard but empowering in the end. The part of HTCwP's comment which is hard for me to answer is about doing mirror therapy whilst taking opiates. I'm hoping one of my readers might have some experience of this and be willing to share. You can comment on HTCwP website by clicking on the above link.

Research Blogging has some current research posts.

2012-03-12T20:15:00.000+11:00

Here is the link for Research Blogging's posts on CRPS/RSD. You'll notice most research has come from Body In Mind.

Referring to my list helps me manage pain and symptoms of CRPS/RSD.

2012-03-12T20:09:00.000+11:00

I'm still in remission from CRPS/RSD but this list means I'm prepared if I should have another incident and it returns.

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.

Mirror Therapy reduces pain and symptoms of CRPS
when doing mirror therapy pay attention to the image in the mirror
if pain returns after mirror therapy has relieved the pain, look for underlying problem
breathing out twice as long as in (alternate nostral breathing) I now do it for a few minutes 5 times a day instead of once for 15 minutes.http://crps-rsd-a-better-life.blogspot.com/2010/03/new-research-slow-breathing-effective.html
distraction (the research)
magnesium for muscle spasm
fish/fish oil for inflammation
beetroot for liver protection and
isometric exercises to reduce pain
epson salts warm bath
chili cream (capsaicin)
heat pack
graduated repetition of movements
pacing
move it or lose it - Bollywood dancing (of sorts)
deflated ball gives a great massage
butterball bath bomb
water relaxes, calms,slows and improves breathing, helps sleep
Caring Doctors
Letting go of worries and avoiding stress
Actively seeking happiness
I will take vitamin C if I must have surgery as it can prevent crps.I will also take it after injury.
Eat nutrient rich antioxidant foods. Eat smart.
use Prantal powder for hyperhydrosis
make a list what works for me as a quick reference.
don't despair when I have flare up. Refer to the list.
Doing the same movement in different ways to reinforce that "it's ok"
Following a dental procedure which works for me (google dental crps)
Changing thinking, not "what can be done for me" but "what I can do for myself.
Taking the "glass half full" approach
Yamamoto neuro-acupuncture reduces pain and symptom os CRPS
laser acupuncture
alternate nostril breathing
Understanding that while it hurts it's not necessarily harmful!!!

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.

Build resilience - preparation for difficult times.

2012-03-12T16:22:00.002+11:00

I follow Dr Joe on twitter. He tweeted about his post by Bob Choat, How to increase resilience in order to come back from life's difficulties.
Recently I was reading that some people coped in extreme situations by mainting some element of control eg when being tortured they might determine not to allow themselves to cry out until they counted 30 seconds. The choice and control is then theirs and not solely determined by others.
Bob's article seems to give the same message, work out a plan and maintain control.
This has revelance for those with CRPS because from one day to the next we don't know how things may be for us. Making my list has helped me be prepared and take control. I have a plan and a variety of strategies to use to manage major flares. I encourage you to read Dr Joe's post and consider the value of being prepared and having a plan.

Nursing patients with CRPS/RSD

2012-02-28T15:36:00.001+11:00

One of my twitter followers asked for help finding guidelines for being nursed in hospital. This article Turning the Nightmare of Complex Regional Pain Syndrome into a Time of Healing, Renewal and Hope by Christina Montana and David D. Kautz has a great table of nursing interventions on p141 The link starts at p139. It's well worth a read. If I need admission to hospital I'll be noting the suggested guidelines and giving my providers the information and link.

Lorimer Moseley, David Butler, Thacker and Lauw presenting at World Confederation for Physical Therapists.

2012-01-31T15:02:00.002+11:00

I recommend this Pain Management Presentation by Lorimer Moseley, David Butler, Thacker and Lauw at World Confederation for Physical Therapists.

Pain effficacy of analgesics has been shown to be decreasing - research shows.

2012-01-29T20:38:00.000+11:00

Dr Nancy Sajben is a Neurologist specializing in complex intractable pain. Her recent post, Painkiller Efficacy in 2010 Less Than in 2000 discusses the Danish research The evidence for pharmacological treatment of neuropathic pain.

Those interested in drug treatment for intractable pain could find this interesting.

More about Free Radicals are possible mediators of mechanisms leading to some of the neurological symptoms of CRPS/RSD.

2012-01-22T18:01:00.000+11:00

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.

At first Sudeck's work was questioned as CRPS was generally thought to have more been generated by an overactive sympathetic nervous system. results of studies by Van der Laan and Goris, "Sudeck's syndrome. Was Sudeck right?" support his theory. This pdf is worth reading by the same authors. Clinical signs and symptoms of acute reflex sympathetic dystrophy in one hind limb of the rat, induced by fusion with a free-radical donor.

This website P.A.R.C. has great information about Dutch Research.

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 micro nutrient (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 micro nutrients 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.

This is where my eating smart comes into it.

Body in Mind's Luke Parkitny talks about glia cells.

2012-01-18T10:19:00.000+11:00

Luke Parkitny is researching some of the factors that play a role in the development of Complex Regional Pain Syndrome. His latest post in Body in Mind, TNF-a: the scoundrel that can smile looks at how the nervous and immune systems talk with each other. His post simplifies this Swiss Study.

CRPS UK has more information about the inflammatory bresponse in CRPS.

2012-01-18T10:06:00.001+11:00

Richmond Stace is a physiotherapist with a background in pain neuroscience. His website CRPS UK is a great source of valuable information. I posted recently about Luke Parkitny and Richmond has posted this series of research and links CRPS and Inflammation which adds to the accumulating information available about the inflammatory response in CRPS.

Recent research about CRPS/RSD.

2012-01-18T09:49:00.000+11:00

Howard Black is a Professor of Medicinal Chemistry who has had Complex Regional Pain Syndrom for 15 years. He has a website which is a Definitive Link Library for RSD/CRPS/Chronic Pain. I subscribe to Howard's Newsletter in which he lists the latest research he has been able to find. Howard's Newsletter Archive is worth a look for those interested in news and research. Links to research do not indicate agreement with or condoning the information. It is offered on an "as is" basis merely reporting what has been published.

New Body In Mind post - factors that play a role in the development of CRPS.

2012-01-13T07:59:00.000+11:00

Luke Parkitny is currently looking at whether inflammation differs in those who develop CRPS after wrist fractures.

Call for help from Chronic Pain Australia

2012-01-06T20:59:00.000+11:00

Dr Coralie Wales

President

Chronic Pain Australia sent me this important message asking for help. I thought I'd pass it on.

National Pain Week 2012

WE NEED YOUR HELP

We are presently planning National Pain Week 2012. We have managed to secure some corporate support however the transfer of those funds to our Chronic Pain Australia purse may take another 3 months.

This is a call for help.

We need to pay deposits for the major event we are planning in Canberra and secure the expert services of specialised people to help us make National Pain Week the big success that it is going to be. Without immediate funds we risk losing our ground and failing to secure the services we require to make it all happen. If all our supporters could help with a small contribution we can get cracking on the urgent things that need to be done now to create a really successful National Pain Week. If you are able to contribute $5 now, please click on the heart below to go to our online donation page. If $5 is beyond your budget, anything you can manage would be fantastic. Of course all donations over $2 are tax deductible, and if you want to contribute more please do!

When you make your donation please email us and let us know. Tell us if you are happy for us to include you on our sponsors and supporters page for 2012 National Pain Week. Lets show Australia just how strong we are!

To read more about National Pain Week 2012 please click here.

Many thanks and best wishes to you for 2012.

best wishes
Coralie