Thursday, February 26, 2009
Sunday, February 22, 2009
"Explain Pain" is about the excellent book by David & Lorimar Moseley. This book made the concept of new science of pain within the grasp of patients as well as being a wonderful tool for therapists.http://explainpain.blogspot.com/
"Neurodynamics - Physical and Neural Nealth" gives some background on the NOI Group's beginnings.http://noineurodynamics.blogspot.com/
"Neuromatrix training" talks about motor imagery, visualization and mirror visual feed back. Here you'll find descriptions of treatments the first of which is Complex Regional Pain Syndrome.http://noineurodynamics.blogspot.com/
To view these blogs click on the links here or go to to the links under"crps/rsd related articles" to the left of this blog.
Saturday, February 21, 2009
At present I am very interested in his series of six posts about Mirror Therapy.
However before you read these the video of Ramachandran before Mirror Box Therapy Part I is worth watching.
- 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 is 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 brains 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 have had pain for a long time my image of my body part becomes distroted 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.
Friday, February 20, 2009
It is the first US website I have found to embrace the new science of pain management balancing what is already known with what is cutting edge science.
- As you will know by now I can not take medication. However if you do take them I recommend you understand about the different types and how they affect you. HTCwP has a great series on this topic.
- HTCwP has just added another great post with an update on research and medication. I recommend reading it. Being informed is being empowered with the knowledge to make decisions for ourselves.
- HTCwP posts about strategies for coping with pain and also the anguish which goes with chronic pain. One of my favourite posts about this is about the benefits of journal writing. This blog is my journal about what works for me to cope with pain & symptoms. Dr. Robert Emmons, of the University of California who has written a book about Gratitude and Happiness, suggests daily journal writing about what we are grateful for on that day. This keeps us focused on the positive. Here's HTCwP's post.
- Mindfulness is in effect an awareness of what is. It's a technique of fostering acceptance by being aware of only the here and now without judgment. If you are mindfully eating chocolate you are aware of the smoothness, the rich taste, the way it slips around your mouth and sticks to the sides of your mouth, as against eating chocolate whilst writing your shopping list or watching TV or chatting. HTCwP's post about mindfulness has a wonderful explanation about how Mindfulness relates to pain. This is definitely recommended reading.
- Finally I'd like to draw your attention to the series of interviews on HTCwP. As you know my interview is included however I would like you to read Dr Lorimer Moseley's interview about the new science of pain. Dr Moseley co wrote "the exceptional book "Explain Pain" with David Butler. Another exceptionally talented physiotherapist is Matthias Weinberger, a German physical therapist who has a great understanding of newer treatments for pain. Both of these therapists work have embraced the new pain science, Dr Moseley as a researcher and Matthias as a practitioner. This new understanding of the role the brain plays in pain and how we can retrain the brain to break the pain cycle is very exciting and offers great hope for sufferers of chronic pain. I recommend you read the interviews by scrolling down this link.
I believe knowledge is power and I thank How to Cope with Pain for sharing the knowledge which empowers us to help ourselves.
I will post about each individually and highlight posts which really interest me. I encourage you to visit these sites and click on their archives. Look at the topics and seek information to help you.
Thursday, February 19, 2009
By using a mirror image of a normal limb to convince the brain that everything is OK, V S Ramachandran, a United States Neurologist, in 1998, managed to relieve phantom limb pain.
Since then research has shown that Complex Regional Pain Syndrome and other chronic pains can be relieved by looking at the mirror image of the corresponding painful body part.
In Australia there is a great deal of interest, with mirror therapy becoming more widely accepted as treatment for chronic pain, in particular for the treatment of Complex Regional Pain Syndrome.
In 2004 thirteen chronic CRPS Type I patients were given two weeks each of a hand laterality recognition task, imagined hand movements and mirror therapy. The results upheld their hypothesis.
In 2006 at Oxford University in the UK, Dr Lorimer Moseley was involved in a much larger study . Their conclusion was that Motor Imagery using mirrors reduced pain and disability in patients with Complex Regional Pain Syndrome Type I or phantom limb pain, but the mechanism, or mechanisms, of the effect were not clear.
Dr Moseley and David Butler have written an excellent book which examines this novel approach to pain management, "Explain Pain". The Neuro-orthopeadic Institute of Australasia, NOI Group, was formed to support therapists here, in the USA and in Europe. If interested go to the left of this blog and click on the link under crps/rsd related articles.
In the UK doctors, such as Dr Candy MacCabe of the University of Bath's School for Health, and Dr Ilan Lieberman, a Consultant Doctor specializing in Pain Medicine and Anesthesia at the University Hospital of South Manchester in England, have been able to alleviate the pain of Complex Regional Pain Syndrome using a simple mirror box.
In 2003 D MacCabe first described the use of this therapy for CRPS Type I. She showed that mirror visual feedback (MVF) relieved pain significantly, and normalized temperature changes in the affected limb.
This 'cortical' model of pain suggests that the brain's image of the body can become faulty, resulting in a mismatch between the brain's movement control systems and its sensory systems, causing a person to experience pain when they move a particular hand, foot or limb.
Researchers believe that this kind of problem could be behind a host of pain-related disorders, such as complex regional pain syndrome and repetitive strain injury.
For more good evidence of the use of mirror therapy to alleviate pain and symptoms look to the left of this blog under "mirror therapy links" and for more of my posts on mirror therapy including photos, scroll down on the left of this blog and click on the tag "mirror therapy".
Wednesday, February 18, 2009
Organizations from the pain care community to support the introduction of the National Pain Care Policy Act of 2009, H.R. 756 in the U.S. HOR.
The American Pain Foundation is one of many who have endorsed their support.
Click here to add your organization's support. http://action.painfoundation.org/site/Survey?SURVEY_ID=2940&ACTION_REQUIRED=URI_ACTION_USER_REQUESTS
To read the consensus statement form the American Pain Foundation website please click here.http://www.painfoundation.org/page.asp?file=Action/NPCPA2009ConsensusStatement.htm
To bring about change action is needed. It is not enough to sit back and let others do things for us. President Obama encouraged his people to take responsibility. I encourage pain organizations to join the fight and show that you speak with one voice.
Tuesday, February 17, 2009
told me about the efforts of the neurology channel to raise awareness of CRPS/RSD by hosting a petition to advocate for a Nationally Recognized Reflex Sympathetic Dystrophy (RSD) Awareness Day.
You need to be an American citizen over the age of 18 to participate. The petition can be found here
Wednesday, February 11, 2009
Monday, February 09, 2009
Parts of the State of New South Wales are on fire and the State of Victoria in our South East is devastated by the worst fire in Australia since European settlement. Many lives have been lost with the number rising daily. Many more seriously injured.
Thank you to those who have shown concern. I live near Byron Bay about the middle of the Coast of Eastern Australia. We are O.K. here.
Australians have a strong bond of mateship. In times of need people support each other. It's something about which we can be proud.
We are also very grateful for the offers of prayers, sympathy and help from other countries.
If interested, click on the blog title for the poem "My Country". The words ring true for today.
Friday, February 06, 2009
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 Therapy. 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 Sympathetic 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 these under CRPS/RSD related links to the left of this page.
For those getting this as an email post, you'll need to go to my blog and scroll down on the left of the blog to find the links.
Unfortunately the only link I was able to find on research about Aqua Therapy specifically for the treatment of CRPS was this link to the Clinical Journal of Pain. It's about the Short and Long term 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
Thursday, February 05, 2009
With CRPS/RSD I have learned to take one day at a time. Many things have helped in in my journey to wellness, the most significant of these being Mirror Visual Feedback.
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.
- when doing mirror therapy pay attention to the location of most pain.(July 07)
- if pain returns after mirror therapy has relieved the pain, look for underlying problem (October 07)
- essential oils (still experimenting but amazed so far)
- breathing out twice as long as in (August) I now do it for a few minutes 5 times a day instaed of once for 15 minutes.
- resperate machine could be used to control breathing(November)
- distraction (September archives)
- magnesium for muscle spasm (September)
- fish/fish oil for inflamation (September)
- beetroot for liver protection and antidepressant (September)
- isometric exercises to reduce pain (September)
- epson salts warm bath (September)
- chili cream (capsaicin)
- heat pack (September)
- graduated repetition of movements (September)
- move it or lose it - Bollywood dancing (of sorts) August 07
- deflated ball gives a great massage (see photo Sept)
- butterball bath bomb (Sept)
- water relaxes, calms,slows and improves breathing, helps sleep (Sept)
- Caring Doctors (Sept)
- Letting go of worries and avoiding stress (Oct)
- Actively seeking happiness (Oct)
- I will take vitamin C if I must have surgery as a precaution. (Nov)
- eat nutrient rich antioxidant foods. Eas smart. (Nov)
- use Prantal powder for hyperhydrosis (Nov)
- make a list what works for me as a quick reference. (Nov)
- don't despare when I have flare up. Refer to the list. (Nov)
- Doing the same movement in different ways to reinforce that "it's ok"
- Following a dental procedure which works for me (Nov)
- Changing thinking, not "what can be done for me" but "what I can do for myself" (Nov)
- Eating smart - increasing antioxidants especially vitamin C in my diet. (January )
- Eating smart - making sure I eat a variety of high antioxidant foods including vitamin C. (March 07)
- Taking the "glass half full" approach (October)
- Yamamoto neuro-acupuncture (Nov 07)
- laser acupuncture mirrors
- alternate nostril breathing (October 08)
- 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.
Tuesday, February 03, 2009
An item "Pain relieving effects of acupuncture are limited" caught my attention. I can only speak for myself but I have to say that my experience contradicts the findings of this study.
I was skeptical about acupuncture at first. However I'd had elbow tendinitis for months and weakness in my right hand with inability to grasp and hold objects. Inflammation is part of CRPS and this tendinitis flare up involved the whole limb including the usual CRPS symptoms of hypersensitivity, temperature, colour and persperation changes. In desperation I looked to the internet for treatment options and found double blind research about acupuncture for "tennis elbow". The published research actually mentioned the points used and the method so I to this to my GP who also used laser (not needle) acupuncture. She followed the points as described and after three treatments the pain had gone and I was able to use my hand as before.
Now this was no faith healing as I really didn't expect it to work.
Another significant experience was when I told my current GP that I'd had a migraine for over three weeks. He insisted on doing Yamamoto New Scalp Acupuncture, a type of acupuncture developed by a Neurologist to treat Parkinson's disease and stroke and now used for neuropathic problems. I was really unsure and argued against the use of needles but my doctor assured me. He inserted three special very fine needles. Immediately I felt a sense of relaxation and after 30minutes the pain had completely gone and did not return. I was amazed.
Early last year I again had elbow, wrist pain and loss of function. I could not hold a coffe cup.
This same GP again used Yamamoto New Scalp Acupuncture. Within three weeks all pain had gone but that was not all. To my complete amazement all my cardiac symptoms had disappeared. I could walk up a hill with no shortness of breath, and a long flight of stairs. I had no crushing chest pain, paroxymal atrial fibrulation, and my blood pressure was absolutely text book normal. This was not only amazing, it was life changing. It lasted three weeks untill I had an accident in which I had sudden severe pain when I ruptured my cruciate ligament and tore both menisci and other knee damage. Immediately the cardiac symptoms returned.
The point I am trying to make here is that in my opinion more research is needed on the subject of acupuncture for pain. In my experience it definitely works.
Just to update you on my knee injury. I tried conservative treatment (physical therapy etc) but was unable to straighten my knee. On January 9, I had an arthroscopy folowing published protocols for prevent RS/CRPS after arthroscopic surgery. It was completely successful. I can now walk normally.
The next step in my plan is to again have Yamamoto New Scalp Acupuncture to try and calm the autonomic nervous system as it did before so that the cardiac symptoms are gone. I'll let you know how it goes. At present my GP is overseas so will see him about this when he returns.
crps/rsd related articles
- Nursing Patients with CRPS/RSD
- Vitamin c and CRPS 2010
- Cleveland Clinic link - twin research
- Complex Regionaal Pain Syndrome and identical twins.
- Familial occurance of CRPS.
- Headache a risk factor for CRPS.
- Ehlers Danlos Syndrome and CRPS
- Brain change in chronic CRPS -Neuron
- Vitamin c as preventative for CRPS - Netherlands study 2007
- Vitamin C and CRPS study ARC Bristol
- BestBETs Best Evidence Topics - Hydrotherapy for Comples Regional Pain Syndrome (CRPS) of the foot and ankle
- Neurotopian - Matthias Weinberger's fantastic blog.
- hope-4crpsrsd - a Christian support group
- podcast - Australian Native Fruits bear sweet antioxidants.
- Explain Pain - David Butler's blog
- CRPS/RSD and Dentistry
- HTCwP - brain control of movement is altered in CRPS - study
- HTCwP - Self Compassion or Self Esteem
- Neuromatrix Training Blog
- Neurodynamics - Physical and Neural Health Blog
- Explain Pain Blog
- JB & JS report - Can Vitamin C Prevent Complex Regional Pain Syndrome in Patients with Wrist Fractures?
- Matthais Weinberger's interview on "how to Cope with Pain" website.
- How to Cope with Pain - Ketamine Coma treatment for CRPS/RSD
- RSDHope - DVD set of three
- North Western University Feinburg School of Medicine "Old Memory Traces May trigger chronic pain."
- HOw to Cope with pain How Pain Affects Families -Tony's story.
- Prevention.com article -"Natural-Born Pain Killers"
- Brain control altered in movement with CRPS -How to Cope With Pain
- How to Cope With Pain - Asking for help.
- Hooshmand and Physical Therapy Part I
- Hooshmand and Physical Therapy Part II
- How to Cope with Pain on Recognize - Here's a way to get ready to move - with less pain.
- American Pain Foundation Booklet: Treatment Options - A Guide for People Living in Pain
- Preventing CRPS after surgery - International Research Foundation for RSD/CRPS
- How to Cope with Pain - great questions about Graded motor movements
- How to Cope with Pain - Recognize podcast
- How to Cope with Pain - Graded motor imagary
- How to Cope with Pain - Think & move & your pain will improve.
- How to Cope with Pain - CRPS - Can mirrors help?
- RSD Canada Online Survey Questionnaire
- For Grace web site
- For Grace Utube site
- How to Cope With Pain - Can mirrors help?
- Noi Group Australia
- Support groups help you cope with pain - HTCWP interview by National Pain Foundation
- How to Cope with Pain Mindfulness video from Utube.
- "How to Cope with Pain's" hilarious video.
- Jason's RSDS/CRPS News & Information blog
- BBC UK News - Vitamin C /crps study - "Mystery pain left me in a wheelchair"
- Dr Moseley's interview on How to Cope with Pain site.
- Virtual Reality as a Rehabilitative Technology for Phantom Limb Experience.
- UK mirror box therapy site.
- Ramachandran's mirror box video
- My interview on "How to Cope with Pain" website.
- Napp Pharmaceuticals donate mirror boxes - WebWire article
- How to Cope with Pain: A guide to coping with pain.
- Hooshmand and Physical Therapy Part II