Saturday, August 29, 2009

Are genetic factors contributing to development of CRPS/RSD?

Not enough is known about predisposition to conditions such as Complex Regional Pain Syndrome. CRPS patients are left with chronic pain, vasodysregulation, and other symptoms. The predisposing factors are unknown. Genetic factors undoubtedly contribute, and are just beginning to be identified.

Researchers at Massachusetts General Hospital ( MGH ) have found the first evidence of a physical abnormality underlying CRPS. They reported four CRPS patients also diagnosed with the classical or hypermobility forms of Ehlers Danlos syndrome (EDS), inherited disorders of connective tissue. They hypothesized that "EDS might contribute to the development of CRPS.

Springer Link, published an article about Japanese research "Headache and first degree family history of headache may be a risk factor for complex regional pain syndrome".
They investigated whether or not headache and family history of headache were risk factors for CRPS. Their results suggested that headache and first-degree family history were risk factors but suggested further studies with larger numbers be carried out.

It seems that pilot studies are undertaken with promising results but little follow up is undertaken. It is my thought that there appears to be a hit or miss approach to research and not enough of which is publicly funded.

Pub Med published this Netherlands study which looks at Familial occurance of complex regional pain syndrome.
They concluded that patients with familial CRPS developed it at a younger age and have a more severe characteristics suggesting a genetic predisposition.

Parc Promoting Awareness has a copy of an abstract from Stanton-Hicks, Cleveland "Complex Regional Pain Syndrome in Identical Twins". Please scroll the page in the link for this abstract. They state that this is the first reported case of CRPS with identical twins. Milly, if you read this post you'll realize how important this is. I'm giving you the link to Cleveland Clinic.
I recommend you contact them and share your information, or at least pass this suggestion and information on to your doctors.



Identical twins with CRPS/RSD

A visitor wrote about twins with RSD. In the next few posts I'll be looking at genetic and predisposing factors for developing CRPS.


Saturday, August 22, 2009

Byron Zone

I made this slide show. I thought I'd share where I live with you.

Kissed by the first rays of the morning sun, Byron, a shire of splendour, on the rim of an ancient shield volcano, is a meeting place of peoples and cultures. A 1000 year old midden at The Pass in Byron Bay is testament to the traditional ownership by the Arakwal Aboriginal people who remain custodians of this land.

Since its discovery by Captain Cook in 1770, Byron Bay has morphed from working man's town to play town. The surrounding towns and villages that make up this unique shire are also captivating, each with its own special charm.

More than just one town, this is Byron Zone.

Friday, August 21, 2009

What works for me with symptoms of CRPS/RSD.

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.

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.

Thursday, August 20, 2009

Not all mirror therapy is the same.

If you google "mirror therapy" you come up with a range of therapies all calling themselves "mirror therapy". Some mirror therapy has been developed to combat body image problems and involves face on examination of yourself in a mirror and "telling yourself" that this or that body part is OK. This, I believe, is a form of training and psychologically based.

It is not the same as the mirror therapy which was invented by Vilayanur S Ramachandran (see link to left of page) to help alleviate "phantom limb" pain. Further studies in the UK and in Australia have proven this type of mirror therapy to help allieviate the pain and symptoms of complex regional pain syndrome. Just as the brain keeps responding with pain messages in the case of phantom limb so too does the brain send pain and pain response messages in the case of CRPS. These messages are not in response to something being wrong (eg dropping a hammer on your foot). The messages are brain driven. The brain latches on to the pain message after an initiating event. The problem is the message remains when the event is over. The brain is what tells you there is pain in the same way as the brain creates the message to tell you heart to beat. You cannot consciously tell your heart to stop beating any more than you can tell yourself to stop the pain. It isn't just pain messages that the brain sends out in CRPS, it's protective messages because of pain eg inflammation, swelling, sweating, vascular messages, colour and temperature changes. These things are under the control of the autonomic nervous system - out of our conscious control.

It hurts and our learned behaviour is to protect the hurting part by stopping things touching it and moving less or resting. This is the best thing to do if the pain was from an injury. I know that I need to override the normal pain response and move normally and not protect the hurt part. It isn't easy. That's where the mirrors come in. The brain message is wrong. I cannot take pain medicine but even if I could I'd only be treating the symptoms of pain not the cause. The cause is these false messages. By looking at the mirror image of the body part opposite to the one that hurts moving, the brain gets visual stimulus of a moving pain free limb. The brain is being retrained. For me there is usually no instant difference. About 10 minutes after I've finished I notice that I don't feel quite as bad. I do it again and again. It takes effort and I need to keep doing it for several days or weeks. I treat each flare up immediately before it spreads (as it very quickly does for me). Doing this gives the best result. When the pain stops, it is gone for good. If the pain is in the same place again, I know something has triggered it and follow the same process again or if the pain keeps returning I look for some underlying problem.
Mirror therapy isn't the whole answer.

  • I do physical therapy every day in small amounts throughout the day. Physical therapy is essential to regain lost function. I try not to over do it (very hard).
  • I breath out twice as long as in for 15 minutes every day to activate the parasympathetic nervous system.
  • I have laser acupuncture, Yamamoto New Scalp Acupuncture and use self hypnosis.
  • I eat foods high in antioxidants (prunes are highest) to deal with the free radicals caused by stress of coping with CRPS. I "tweaked" my diet so that I have more antioxidants especially Vitamin C. Vitamin C demolishes the free radicals involved in inflammation.
  • I refer to my list of things that work for me when I have flare ups.

My plan was to persist until the symptoms of CRPS resolve. I am now in remission. My plan worked for me. I still eat smart and follow the plan when I have other pain.I've discovered that mirror therapy works for other types of pain.

If interested look through my blog under archives to see explanations of what I do and photos. Click on tags under posts to bring up other posts on that topic.

Wednesday, August 19, 2009

In the doctor's dimension - a daunting experience!

I've posted previously about Usiku's new book, Eloquence
Usiku also hosts a website
Writers' whirlpool where he posted his thoughts about the waiting game at the doctor's office, a daunting experience at the best of times - In the doctor's dimension.

Tuesday, August 18, 2009

Sudeck's 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!

Saturday, August 15, 2009

New French study shows the effectiveness of vitamin c in prevenion of development of complex regional pain syndrome.

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

"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.

Friday, August 14, 2009

Pain a neuromatrix approach

This paper by Dr Moseley, Pain a neuromatrix approach to patients with chronic pain

"The clinical approach focuses on decreasing all inputs that imply that body tissue is in danger and then on activating components of the pain neuromatrix without activating its output."

Soma simple physiotherapy forum has much discussion on this. Noi Group has resources about this. There si a NOI conference in the UK in 2010 which discusses this topic.
emphasizes the important part physical therapy has to play in treating and rehabilitating patients with chronic pain. The longer the pain lasts the less it takes to make things worse "inputs".

Thursday, August 13, 2009

In answer to David's question

Interesting point about the attention to the point of initial site of that flare up. Can you explain more and how this relates to the discoveries of V.S. Ramachandran?

I suggest reading
The use of visual feedback, in particular mirror visual feedback, in restoring brain function V.S. Ramachandran and Eric L. Altschuler

"This article reviews the potential use of visual feedback, focusing on mirror visual feedback, introduced over 15 years ago, for the treatment of many chronic neurological disorders that have long been regarded as intractable such as phantom pain, hemiparesis from stroke and complex regional pain syndrome."
It states, "Apart from its clinical importance, mirror visual feedback paves the way for a paradigm shift in the way we approach neurological disorders. "
I can only access the abstract. I suggest reading the whole article if you can.

This article in MSN Body & Fitness - Brain and Body by Maia Szalavitz on mirror therapy offers a few ideas from Professor Jack Tsao and Dr Lorimer Moseley about possible reasons for mirror therapy working for some and not others.

As far as Ramachandran goes wikipedia states
Ramachandran and Rogers-Ramachandran proposed the "learned paralysis" hypothesis of painful phantom limbs (Ramachandran & Blakeslee 1998).

It goes on to state
The patient places his or her good limb into one side, and the stump into the other. The patient then looks into the mirror on the side with good limb and makes "mirror symmetric" movements, as a symphony conductor might, or as we do when we clap our hands. Because the subject is seeing the reflected image of the good hand moving, it appears as if the phantom limb is also moving.

The important thing to note here, I believe, is that the patient is focusing on the mirror image of their whole limb in the area of the limb that is painful on the other limb (or phantom limb).
If the arm is missing from the elbow down, it is the mirror image of the limb from the elbow down of the good arm that the patient is watching in the mirror. It is not the upper arm, or the shoulder, or just the fingers. It is the actual painful missing limb that is the focus.

I came to the realization that you need to be mindful of the main focus of pain and concentrate on that part because I got it wrong. We learn from our mistakes. I was treating a left shoulder flare up which had quickly included the whole arm. I was raising and lowering etc my right arm and watching the mirror image of the right arm. I did it a little and often as I've learned is best for me. Nothing happened. No pain relief or change in sensation, or relaxation of muscles etc.
I thought I'd been kidding myself about mirror therapy. Maybe I was wrong.

Then it hit me. It was tendonitis in the shoulder that started this flare. I went back and tried this time looking at the mirror image of my shoulder while I moved my arm in a way that caused pain in my painful side. It worked! As on other occasions, there was no miracle cure but I noticed a relaxation of muscles, releasing of muscle spasm and a sense of calm. I repeated the mirror trick a little and often and eventually the pain went. Fixing the pain is just part of the answer. Weak muscles and loss of tone needed be addressed so physical therapy was important. There is no point in stopping the pain without doing something to fix the problem. Pain will just return.

Check out .If pain returns when you stop mirror therapy there could be an underlying pathology

It also seems important that the patient be mindful of what is happening in their own body, how it feels, what works, what feels unhelpful. It seems important that the patient trusts their own feelings and the therapist listens and is guided by what is actually happening.

I am really interested in discovering the link between miror neurons, the cortical representation of the body in the brain and the micro system of the body in the scalp in Yamamoto New Scalp acupuncture. At first they seem polls apart but I know from experience that they both work to resolve CRPS. They appear to have the same/similar means of respolve. They both involve body in the head/brain stuff. It feels the same when symptoms improve and symptoms improve along the same path eg extremities back to the initial source of pain. I wish I understood. I want to know more.

Graded motor imagery - mirror box therapy - recommended

The Neuro orthopedic Institute (noigroup) explains graded motor imagery and mirror therapy.

"While there has been some promising research on the effectiveness of using mirrors, we don’t really know the best protocol. Therefore, ideal management will have to be individualised."

It's for this reason some people find that mirror therapy doesn't sem to work for them. I suggest that it is more a case of mirror therapy works but getting it right for the individual is the important thing. In my case I've found that I must pay attention to the point of initial site of that flare up. If, for example, I'm looking at my arm moving but the initial pain was the shoulder, it doesn't work. When I change focus to the shoulder then it works.

There are very good suggestion on this site for getting it right.


Wednesday, August 12, 2009

CRPS/RSD - taking control

Complex Regional Pain Syndrome involves unrelenting pain to different degrees, throughout the days. It's easy to feel out of control. It's frightening and the future can seem bleak.

For me each time I make a conscious decision about something I give myself control.
I did not make a conscious decision not to take pain medication. I had no choice. Now I'm grateful that it happened that way as I do not have the side effects of meds. That's a blessing.

It took me a long time to feel there was something I could make a conscious decision about, but now

  • I choose to exercise.
  • I choose to use a heat pack or chilli cream.
  • I choose to soak in an epson salts bath.
  • I choose to do guided imagery (Recognize)
  • I choose to do mirror therapy which is scientifically proven to work.
  • I choose to control my breathing to activate the parasympathetic nervous system.
  • I choose to have Yamamoto new Scalp Acupuncture which is proven to work.
  • I choose to take a wholistic approach to wellness.
  • I choose acceptance of things I cannot control and focus on what I can do.
  • I choose to eat smart.

I've made many more conscious decisions and with each conscious decision I become empowered. I know why I make the choices I do and I believe they have helped me cope better with the pain and symptoms of crps. I am now in remission, I believe, because of the choices I've made.

Tuesday, August 11, 2009

Pain - the invisible illness

I'll be blogging a post for invisible illness awareness week September 14-20 2009.


Kathryn Carver's painting "Living with it" expresses how it is for her to live with chronic pain - the invisible illness.

Monday, August 10, 2009

HTCwP classes in Pain Management - recommended

How to Cope With Pain has a brilliant series of Classes in Pain Management which are posted each Monday since January.

Breathing Exercises, Part 1

Breathing Exercises, Part 2

How To Change A Habit, Part 1


How To Change A Habit, Part 2

Visualization

Guided Imagery Part 1

Guided Imagery Part 2

Stress management Part 1

Stress management Part 2

Relaxation exercises

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.

Sunday, August 09, 2009

NEJM reports Mirror therapy for complex regional pain syndrome type 1 - Thanks again Steve for sending me this link.

New England Journal of Medicine 2009 reported Mirror therapy for Complex Regional Pain Type 1 and Stroke.Their randomized sham controlled study indicated that mirror therapy effectively reduces pain and enhances motor function in the arm of patients with stroke and complex regional pain syndrome type 1. It stated that "the traditional view that in patients with stroke, complex regional pain syndrome type 1 in the arm is refractory to mirror therapy needs to be reconsidered."

Thanks Steve for letting me know about this. There is more and more evidence supporting this type of therapy for brain retraining and reducing pain.

Saturday, August 08, 2009

David Butler talks you through mirror therapy

David Butler explains how to use a mirror box. - recommended viewing.
Please note David suggests enriching the experience by varying the situation. Thanks to http://healthskills.wordpress.com/ for alerting me to this video

Friday, August 07, 2009

doug and mirror box therapy in action 3 sep

Mirror box therapy for single sided stroke rehabilitation. Thanks Doug - a great video.

how to use a mirror box for hand therapy

A very good video. I do not do mirror therapy this way. I move only my good hand (arm or whatever).
This box can be found at www.mirrorboxtherapy.com

Firbrmyalgia and mirror therapy.

Medical News Today had an article Fibromyalgia Pain caused by Neuron Mismatch.

Dr Candy McCabe at Bath Universsity in the UK has shown that using mirror therapy a mismatch could be identified between what the brain sees through the sense of sight and what it feels through the motor system. It suggests that a mismatch between sensory and motor neurons could be at the root of fibromyalgia pain.

The article states that they have had some success by using a similar mirror technique to alleviate chronic pain.
This was achieved by helping the brain to see a limb moving freely without pain - although in reality it is a reflection of their pain-free limb using a mirror.

This is more evidence of the effectiveness of mirror therapy to ease or resolve pain.

The University of Bath is one of the UK's leading universities.

Monday, August 03, 2009

Pain costs a massive $34.3billion in Australia.


MBF Foundation
, in 2007, funded a study which reported the cost of pain in Australia is a massive $34.3 billion.

Money is available from private concerns such as drug companies to trial new medications. However I believe there is NO money available for research to back up the work already done by 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 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.

Sunday, August 02, 2009

Neuro Orthopedic Institute of Australasia - videos - "Explain Pain Posters"

The Neuro Orthopedic Institute of Australasia (NOI Group) has excellent resources on their website. Today I would like to draw your attention to a series of barefoot videos.

The first of this series of three is "Explain Pain Posters".

Although this video appears to be intended for therapists, it gives a very good explanation of some basic but important points in the book "Explain Pain" and as such is worth watching. Of particular value are the points about hurting and not harming, and pacing.

The second video David Butler and Lorimer Moseley discuss the last five years of Explain Pain. This is interesting as it discusses what has porven to be the most value in this book and considers where to go from here.

Finally the third video sees Dr Lorimer Moseley discussing his new book "Painful Yarns" with Tom Giles. This video demonstrates Lorimers great ability to make complex medical information simple enough for us all to understand. He does this by humourously relating a series af anecdotes of situations with which many of us will find familiar.


I recommend taking the time to watch.

Saturday, August 01, 2009

Mirror therapy is simple to do, inexpensive and really works!

Research has proven with MRI results that the brain changes with chronic pain.

More recently we've learned that changing the inputs or messages to the brain, which is known to have plasticity, causes the brain to change. These are not emotional responses to fragile egos. This is real science showing the pain and symptoms of Complex Regional Pain Syndrome can be managed and possibly resolved using simple, inexpensive, practical methods. This is treating the source and not just band aiding the symptoms. This is very good news for sufferers.

Mirror Visual Feedback, or mirror therapy is based on the finding that visual input from a moving, unaffected limb re-establishes the pain-free relationship between sensory feedback and motor execution in the affected limb.

"Explain Pain" by David Butler and Lorimer Moseley discusses "smudging the neurotag". Persistent or chronic pain leads to changes in the brain. Our brain changes all the time and is dependent on input for information. We become more sensitive to pain, and the area of pain in the brain, the virtual body becomes more "smudged" or less clearly defined. This means that instead of pain being confined to an area, eg the shoulder, the pain spreads beyond the original site. (see Noi Group link to the left of this blog) Dr Lorimer Moseley (physiotherapist and co-author of "Explain Pain") employed a motor imagery program which entailed "two weeks each of hourly performance of hand laterality recognition task, imagined hand movements followed by mirror therapy." (from 8th International Physiotherapy Congress).

It is physical therapists who are embracing this new science of pain. They are involved in the research, practicing and training of therapists around the world.

Mirror therapy is simple to do, inexpensive and really works!
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