Tuesday, March 25, 2008

MBF Foundation of Australia recommends "pain be treated as a health priority with a Co-ordinated National Response."

In November 2007, MBF released a press statement.

First study of Australia’s high cost of pain reveals $34 billion price tag
MBF Foundation calls for national action plan to combat pain impact

"The study’s expert advisory panel led by pain management pioneer Professor Michael Cousins AM, Dr Fiona
Blyth at Sydney’s Pain Management Research Institute found that:
• 3.2 million people are living with pain and more women than men are affected
• Productivity loss is $11.7 billion annually, or 34 per cent of total pain-related costs
• The burden of disease accounts for a further third at $11.5 billion
• Health system costs account for $7 billion, around 20 per cent of total pain-related costs"

Money is available from private concerns such as drug companies to trial new medications. However I believe there is not money available for research to back up the work already done by our own Australian specialists, people such as
Dr Lorimer Moseley & David Butler.

The new science of pain management offers real hope for sufferers of pain. The brain retraining treatments such as guided imagery, limb laterality recognition and mirror visual feedback, hypnotherapy, acupuncture etc are non-drug and non-invasive. As such they do not attract funding from private concerns.

If the cost to Australia is so huge isn't it about time money was spent to validate the current findings and to educate the providers of pain management.

In the UK webwire reported
"NAPP Pharmaceuticals, pioneers of prolonged released drugs for the relief of severe pain have purchased 2,500 Mirror Therapy Boxes for complimentary distribution to pain clinics throughout the UK."

Now is the time for public and private concerns to put their hand in their pockets, show some compassion and support trials of these new treatments. Click on the tags below for more information.

Monday, March 24, 2008

Mirror Therapy Links

Today I posted links about mirror therapy. Scroll down the pages on the links to see photos and illustrations. The Noi Group of Australia has resources and information. Listen to David Butler's podcast if you have time. The UK site has mirror boxes and great information.

There are many trials ongoing. I added these for interest to show you what is happening. Unfortunately not enough trials are being undertaken specifically for CRPS and chronic pain. Much more is needed to provide compelling evidence that miror therapy works.

If you read nothing else I suggest you read the six part Neurotopian links. Matthias Wienberger has the gift of making the difficult concepts simple.

Re-training the brain - some ideas.

I decided to post my reply to a request for more information about re-training the brain.

At first I was so relieved to discover mirror therapy. I read Ramachandran's writing, came across Dr Lorimer Moseley's research in a google search on CRPS and could see the possibilities. I waited till I had a single sided problem (as against whole body all at once) and began what I thought made sense using a mirror. Since that discovery I've come to the realization that there are many things you can do to retrain the brain and also to enrich the retraining experience. An example of this is that if I'm moving my arm in front of a mirror, I can add to this experience by chewing gum, wearing perfume ( burning inscense), listening to various music (singing), having a fan blow on me (heater) etc. Each added thing changes the brain inputs and is a new experience which builds on the "OK" message.

I've also learned that things which activate the parasympathetic nervous system such as hypnotherapy, meditation, acupuncture, yoga, taichi etc also retrain the brain with this same message. To me the most important thing seems to be to do "normal" movements. Things that distract you and require normal movement (such as the WII game mentioned on the How to Cope with Pain website
How To Cope With Pain Blog
retrain the brain that all's well and in the case of the WII, that "all is more than OK, that these movements are also fun" - a powerful message.
This might be a lesson for physical therapists, "put some fun into therapy".

Please ask if I am able to help you in any way.

I'll soon be posting lots of links to research. Yesterday I created a new link section (top left) where I'll post mirror therapy research etc links).

Friday, March 21, 2008

TED Talks - Jill Bolte Taylor -"My Stroke of insight"

I've chosen this post as my contribution to How to Cope with Pain March Blog Carnival. Check pout the other posts in the carnival at

TED Talks published this remarkable story of Jill Bolte Taylor, brain researcher, who had the presence of mind to observe her own responses during a stroke.

Fascinating. I can identify with some aspects. From time to time I experience this euphoric state, in the past immediately after a severe migraine, during out of body experiences and once with self hypnosis used to deal with pain. I can remember as a child on two occasions looking down on myself, once when ill and again when I fell from a boat. I watched myself swirl over and over in the dirty water curled up in, as you describe, an embryo shape. I remember it as a euphoric experience. I was about 5 and was over 50 years ago. I was interested in your description of your changed body perception and loss of proprioception. To a much lesser extent I now at times experience this and then have to retrain myself as to where hands, back etc are, re learn. I have Complex Regional Pain Syndrome (RSD) which "spreads" by smudging the brain's neurotag. The new brain science and understanding of the part the brain plays in pain management is remarkable. I now treat pain with mirrors. I've also realized that brain retraining can be done using various modalities and methods. Just now I 'm receiving Yamamoto New Scalp Acupuncture with quite remarkable results. As to taping into the right side of the brain in a deliberately to improve life or quality of life and/or perceptions, I think this may be what various practices may do. By this I mean the "balancing" in acupuncture, yoga, meditation, neuro linguistic programing, hypnosis etc.
There is much food for thought here. This video lends more weight to the importance of understanding the part the both sides of the brain play in our perceptions and opens us to possibilities.

Tuesday, March 18, 2008

Series of Pain Management Classes on How to Cope With Pain website

How to Cope With Pain has a brilliant series of Classes in Pain Management which are posted each Monday since January.
I signed up for emails from this great website so I don't miss any of their posts. You can also get emails each time I post by putting your email address in the box at the top of this blog. Your address remains private.

Tags give links to other posts on topics.

If you're interesting in reading more on a topic go click on a tag under the post or in the tag list to the left of this blog.

Thursday, March 13, 2008

The Pass to Julian Rocks

Wednesday, March 12, 2008

View from The Pass at Byron Bay

Tuesday, March 11, 2008

Paucity of research means treatments such as Hydrotherapy do not have the scientific studies to suport their use in the treatment of CRPS/RSD.

In my search for research to support the use of Aqua/hydrotherapy for CRPS/RSD I came upon BestBETs Best Evidence Topic, Hydrotherapy for Complex Regional Pain Syndrome of the foot and ankle. A study of 32 papers found no studies compared hydrotherapy to 'dry land' physiotherapy. It was therefore concluded that "there is no evidence of the efficacy of hydrotherapy for this condition."

I wish to point out this does
not mean it does not help. It just means there has been no research to support the treatment. Clearly research into hydrotherapy for the treatment if CRPS/RSD is very much needed. With studies supporting its efficacy therapists can recommend it and health funds support this.

Aqua Therapy my way.

Porta Spa offers a soft, less expensive alternative way for relaxation and ease of movement.

As you are probably aware I love water so when a Porta Spa was advertised in a Christmas catalogue I did some investigating. I was a bit nervous as to whether a blow up spa would be sturdy and would last. However we bought one and I absolutely love it. It heats and blows hundreds of bubbles like a normal spa but is soft to sit in. It's made of the same kind of material as white water rafting boats so is very sturdy. Ours is inflated with the pump in minutes and can be deflated and moved or put away. We use an alternative to harsh chemicals which is added each day. This means we don't have a strong chlorine smell and it's kinder on clothes I think.

What this means for me is that I can have the benefits of being immersed in water without having to fill a tub (we're water conscious in Australia). It's big enough for me to float and move and exercise and the bubbles aren't harsh but keep the water moving over my skin which is great for desensitization. In winter I will be able to get warm everywhere and then rug up warmly. If I just rug up I find my extremities remain cold.

For any Australians reading this I found this spa in a Target catalogue for A$699. Yes I couldn't believe it either. The local pool shops sell it for about A$2500. When I was searching for information I discovered it's available in the UK and the USA. As Kath from Kath & Kim would say, "I'm just loving myself with my new spa".

Aqua Therapy is beneficial for RSD/CRPS

I talk a lot about the need to move normally and to retrain the brain with the "ok" message. An excellent way to do this is with Aqua Therapy. Tony Tobin who owns the UK Yahoo Group RSD/CRPS World News Group http://health.groups.yahoo.com/group/RSD-WorldNews/
is a great advocate for Aqua Thertapy. He attributes it as playing a major part in helping his grand daughter go into remission from CRPS. Tony was interviewed on How to Cope with Pain website. http://www.howtocopewithpain.org/blog/93/how-pain-affects-families-a-grandfathers-story/
I encourage you to read his interview and join his news group. Tony is dedicated to posting the latest in RSD/CRPS News and especially research.

International Research Foundation for RSD/CRPS has information on WATSU which is a combination of aqua therapy and gentle exercises. It also has a free video on "Reflex Sympathetic Dystrophy in Children". This video does not mention the new brain science but does recognize as essential to have "normal use" of your body.

American RSDHope has a section explaining Aqua Therapy and Reflex Sympatetic Dystrophy Association (RSDSA) has an section on it's website answering questions about Aqua Therapy. Parc Promoting Awareness has a section on there website also. You'll find the links for this uncer CRPS/RSD related links to the left of this page.

Unfortunately the only link I was abble to find on research about Aqua Therapy specifically for the treatment of CRPS was this this link to the Clinical Journal of Pain about the Short and Longterm outcomes of
Children with Complex Regional Pain Syndrome Type 1 Treated with Exercise Therapy http://www.clinicalpain.com/pt/re/clnjpain/abstract.00002508-199909000-00009.htm;jsessionid=HVsDfydTSPF4Dwfjc8ylQNp80zNy7tqB53D3gcp5JG3LT7f7vRX3!-830841920!181195629!8091!-1

Sunday, March 09, 2008

Good reasons to get wet!

My physiotherapist explained that the pressure of water helps to bring about a balance between the sympathetic and parasympathetic nervous systems. This has a really calming affect. Water also makes movement easier, very helpful for sufferers of complex regional pain syndrome.She said water's best for this condition at 33degrees.

When it's still too cool to swim soak in an Epsom salts bath. While in the bath I breathe out twice as long as in which activates the parasympathetic nervous system adding to the benefit from water pressure and warmth for circulation.
When I have warm soaking bath I calm the irritation of dry skin by adding a little oil. I put about a cup of epson salts and some liquid soap, usually Radox or liquid soap bubble bath in while the water's running. Straight after the bath I gently rub chili (capsaicin) cream into any area of burning pain. This works well for me.

If you google "epson salts crps" you'll find heaps of reasons magnesium helps. I know a warm epson salts bath makes me feel more relaxed and in less pain. If it does the other things, it's a big plus.

  • relaxes
  • calms the nervous system by balancing the symapthetic/parasympathetic
  • slows breathing unless exercising
  • decreases pain by raising endorphins
  • improves circulation and skin colour
  • releases muscle spasm and cramp
  • helps us breathe deeper
  • decreases feelings of anxiety
  • helps with sleep
  • increases self satisfaction and sense of well being
Good reasons to get wet!

Saturday, March 08, 2008

Avoid the vicious cycle of "over doing" and "paying for it later".

Sufferers of crps have this unique symptom of not only having an altered perception of the affected limb but also physically protecting the limb and therefore developing physical problems due to lack of use or altered use. The brain is the problem here as it is telling us clearly by pain that something is wrong when usually nothing is wrong. Other chronic pain sufferers also develop this altered perception of the affected limb. I think we are given the message by professionals too, that we need pain relief in order to do physical therapy when the more urgent need is move and move bilaterally all the time to maintain condition. We can retrain the brain by moving in a normal way, being mindful of how we move. The more we move normally the more we reinforce the "OK" message. Where we have to be careful is to do it in small steps and often, instead of overdoing it and "paying for it". We get into a vicious cycle of too much and too little. No one said this was going to be easy.

Tuesday, March 04, 2008

New links about research and cases treated with Yamamoto New Scalp Acupuncture.

To the left of this blog I've created a new link section for links to research. At present there are links relating to Yamamoto New Scalp Acupuncture. The most recent link, YNSA-AITNA,


has illustrations which help with understanding of micro acupuncture and the representation of the body in the head. Those of you who have read David Butler and Dr Lorimer Moseley's book, "Explain Pain" will notice the similarity of the representations.

If you are interested in this treatment I encourage you to read the research and case studies.

Monday, March 03, 2008

My experience with Yamamoto acupuncture.

The first time I had Yamamoto New Scalp Acupuncture (YNSA) was November 2007. I've been having Laser Acupuncture for a couple of months. This was releasing muscle spasm, easing symptoms and was calming. However on this visit I'd had a headache for three weeks. I take Vitamin B2 to prevent migraine so this was breakthrough headache, not as bad as acute migraine. My GP was decisive and said that Yamamoto Acupuncture would be best. I was very nervous as I'd heard needles are not advised for people with CRPS. My scalp on the headache side was hypersensitive as was the whole side of my head. He placed one needle on the non painful side and I felt nothing as he inserted the needle, but it was a different story on the headache side. I really felt the needles on that side and was concerned that the pain caused might have made things worse.

This was not the case and withing 30 minutes the headache had gone and did not return.

My next experience with Yamamoto New Scalp Acupuncture was about four weeks ago. I'd made two small cards which involved cutting and fine motor work with my hands. I have a stiff and thick right wrist from the wrist fracture which led to CRPS. I have limited movement in my wrist because of the severity of the fracture which resulted in permanent disability. Fine motor activity appears to cause irritation to the nerves of my right hand/wrist. This is what happened in this case. I had difficulty closing a fist, holding things, squeezing a peg etc. My nerves were firing and my feeling changed in my fingers and hand. The pain traveled quickly to my elbow. Soon my shoulder became painful. Very quickly old pains returned. You may remember I've mentioned before that sometimes old pains suddenly return. By the time I went to the doctor I was in a great deal of pain in my right wrist, elbow, shoulder, right leg, foot and left shoulder, back and my chest. My doctor said it was inflammation and that the median and radial nerves were involved and issues stemmed from C1 to C7 in my back. Not being a medical person, I wasn't sure I understood what he meant but I was prepared to trust his recommendation to use YNSA . I'd read about its use and knew it works for neurological problems.

Although I noticed relaxation immediately, I had no miracle cure. However later that evening I was able to hold things with less pain. By the time I saw the doctor a few days later I had noticeable improvement in my hand but that was not all. The old remembered pains had retreated. Imagine hurting from head to foot and then the pain retreating back first form the extremities. I've been having two treatments a week. Between each treatment I seem to do something which irritates the wrist again so I get better and then slide back a bit. Right now all of the old pains have gone. My hand is painful when I do certain things with it eg turn on a tap. I've irritated the nerves in my hand today by using a pair of scissors. This will always be a problem due to the nature of my injury. The CRPS involvment is the ongoing pain and symptoms and spread of pain to other areas and resurfacing of old pain. The CRPS symptoms have stopped.

Yamamoto New Scalp Acupuncture is affective for treating CRPS pain and symptoms. I have also been using mirror therapy, controlled breathing, and a range of other things from my list. Each seems to support the others.

But there's more!!!!

Just over a week ago I went to the City. I walked up a hill and was surprised at having no tachycardia, shortness of breath and crushing chest pain. I walked up two long flights of stairs. Usually I struggle. Again not tachycardia etc.

Later that day a poor gentleman was hit by a taxi right in front of us. I saw him fly through the air and we were first on the scene to call for help and administer aid. I had no adrenaline rush, no symptoms, no sweating, feeling feint etc. I was calm. This is how I used to be before CRPS. Those who have followed my journey will know I cannot take medicines because of cardiac complications from a hyper sensitive sympathetic nervous system. Suddenly I have no sympathetic nervous system response. In fact I was very calm.

When we came home I checked my blood pressure. It was normal. I stood up suddenly and took it again. No difference. Usually my blood pressure drops about 20 points when I stand from sitting. My blood pressure appears to be normal and no wild swings.

This weekend I again walked up hills and stairs with no problem. At present my blood pressure and cardiac response have appeared to be normal for a week and a half. This is nothing short of amazing.

What this means is that right now my sympathetic and parasympathetic nervous systems seem to be responding normally. I had come to think this would never be the case and adjusted my lifestyle accordingly. I was not expecting this to happen. The only thing that I am doing differently is Yamamoto Acupuncture. I am continuing treatment and will post again soon about how this is going for me.
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