Tuesday, January 29, 2008

CRPS/RSD - recommended websites

To the left of this blog, under the blog archives is a new link list. CRPS/RSD recommended websites is a collection of websites which I use regularly and which offer excellent, current information about Complex Regional Pain Syndrome. Below this are another link lists which direct you to specific topics mentioned in the posts.

Monday, January 28, 2008

Wild thing, think I love you.
My favourite -the wombat.

Brown markings on Doc come from the Australia native dingo. Here handlers are giving up close and personal contact with zoo visitors.
Kangaroos rest in the heat of the day.
Give me a home a among the gum trees.

Otters having fun.

Pretty scary. I took this Friday when we went to Australia Zoo.

Sunday, January 27, 2008

Got his eye on you. Click on photo for a better look.

We spent a wonderful at Steve Urwin's Australia Zoo which is a few hours north of here.

Australia Day 26 - thanks xendingo for this utube video

Monday, January 21, 2008

"Drug approved. Is this disease real?" - Alex Berenson New York Times has opened a can of worms.

How to Cope with Pain http://www.howtocopewithpain.org/ is now offering a monthly Pain-Blog Carnival during the last week of every month, to include each month's best posts. New bloggers are always welcome to contribute. This is my contribution for January's carnival.

New York Times, January 14, 2008 posted the article "Drug approved. Is the disease real?" by Alex Berenson.

Alex's article about US FDA approval of Lyrica for treatment of fibromyalgia has catapulted fibromyalgia into the limelight and again brought the legitimacy of the condition into question.

At first I was planning to give an overview of research studies documenting brain changes and genetic implications etc which clearly indicate the reality of fibromyalgia. Then I read
Dr Richard Harris's (research investigator in the Division of Rheumatology at the U-M Medical School's Department of Internal Medicine) quote in Science Daily, Nov 2006.
He said that the time has come to take patients seriously and "learn more about the causes and most effective treatments for these disorders."


So I decided not to dignify that aspect of Berenson's article with comment.

However I am interested in Dr Dan Clauw's quoted comment in the New Your Times article.
"The new drugs will encourage doctors to treat fibromyalgia patients."

This raises two questions
  • Is a condition not deserving of treatment unless there's a drug that treats it?
  • Is there a perception that drugs are the only legitimate treatment option?
I note Ms Berenson's concern that drug companies fund the research. It's great that they do. However there are other treatments which reduce symptoms of fibromyalgia and other chronic pains which do not attract funding for research because there is little economic benefit to be gained. Published research of successful non invasive/non drug treatment options would add legitimacy and encourage their use in conjunction with the more common treatments.

Ms Berenson I encourage you to investigate these other treatment options, write about these and to approach the major drug companies to support research into these treatments. It
often takes a combination of treatments to relieve pain and symptoms. The BBC reported that Napp pharmaceuticals in the UK donated mirror boxes to pain clinics across the UK. You seldom hear of such altruism from drug companies.

It is time that we went beyond the quest for the almighty dollar and showed compassion for our fellow man.

Below I'll provide links to some already proven but more research needed treatment options.

  • note mirror therapy has been proven to alleviate pain and symptoms of fibromyalgia
  • note -In 1999, a meta-analysis established that exercise produced higher effect sizes on physical status, FM symptoms and daily functioning than pharmacological treatment. (A meta-analysis of fibromyalgia treatment interventions. Rossy LA, Buckelew SP, Dorr N, Hagglund KJ, Thayer JF, McIntosh MJ, Hewett JE, Johnson JC:

    Ann Behav Med 1999, 21:180-91. PubMed Abstract |)

  • The Brain and Chronic Pain (Reprinted from the German Journal of Psychiatry · http://www.gjpsy.uni-goettingen.de · ISSN 1433-1055)
Note: A shortened version of this post has been sent to the Editor of the New York Times.

Sunday, January 20, 2008

Mum watches over her new batch of ducklings which appear each year at this time.

Wednesday, January 16, 2008

How to Cope with Pain Post "Could the Wii make chronic pain sexy?" (click here for the link.)

Tony Tobin, World Healthiest News posted about the game Wii being used for rehabilitation for CRPS/RSD. HTCwP has an interesting follow up and further information about this. It was suggested that if research is published about the pain relieving benefits that insurance companies might fund it, and perhaps therapists may at some point include these in the "to borrow" resources.

More than just distracting the brain, Wii game, because it involves movement makes you move normally to play the game and in so doing retrains the brain that these normal movements are "ok".

Kids particularly undergo very intensive physical therapy. for CRPS. In some instances parents are kept away as it is hard for them to see their kids so upset and in pain. However, despite the pain to do the therapy results are amazing.

This video I posted in November shows this painful, very effective therapy.

The problem with adults is that you can’t force them to do aggressive, very painful therapy. That’s where mirror therapy comes in. It provides pain relief by retraining the brain not to send pain messages and together with aggressive physical therapy the message that normal movement is ok is reinforced.

Games immersing us in the experience and encouraging normal movement are a perfect way to help. It would be great to see the Wii in all pain clinics just as mirror boxes are in pain clinics across the UK thanks to Napp Pharmaceuticals.

Friday, January 11, 2008

Mirrors that help with pain by retraining the brain.

In response to Diane"s question about what mirror box I use, I am showing some of the mirrors I use to help me.

Mirror boxes are very useful for hiding the painful limb. They work very well for hand/foot problems. David Butler says himself that anyone can make a mirror box. However if you would like one both
have great inexpensive boxes.

The bottom line is you do not need a box, any mirror that you can place a leg or arm behind will do.

If you are interested in mirror therapy you can go to the list of "tags" to the left of this blog and click on "mirror therapy". I'll be posting soon about the NOI Group. I recommend reading my post about "neurotropian". Visit Matthias's blog. He has a wonderful knack of making the difficult seem simple. Go through How to Cope with Pain posts in the Archive section. Read my mirror therapy posts and please ask if there is anything you want to know or need help.

Here I've raised my left leg out to the left. This movement is painful for my right leg. It is painful in the upper outer part of the right thigh consistent with bursitis. At the same time my lower back burns and is very painful. I repeat this leg out and down movement about 10 times in each session. I do the mirror exercise several times during each day. Not only does the leg pain settle but with repeated exercise using the mirror the burning back pain also goes. I find now that the time taken to relieve a flare up is less and I now have short periods of time between flare ups. If you go back and read my December 2006 archives, you'll see this has happened since December.

Mirrors I use for mirror terapy.

This is the mirror I mainly use. I stand against and at right angles to the mirror with the painful part behind the mirror out of site. If I'm at a place with a sliding glass wardrobe door, I use that in the same way.
This works for me. Seek the advice of treating professionals.

Hinged makeup mirror I used for facial flare up.

Tuesday, January 01, 2008

Sydney New Year 2008 Part 2 - great finish

Sydney New Year's 2008 Part 1

New Carnival Post on How to Cope with Pain website. Click here for the link.

How to Cope with Pain is now offering a monthly Pain-Blog Carnival during the last week of every month, to include each month's best posts. December's carnival is now posted. New bloggers are always welcome to contribute.

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