Sunday, December 31, 2006

Undercover Doc.
Happy New Year to all & to all a good night.

Google advanced search.

I've put a link to google advanced search to the left of this blog at the top. It's an excellent search facility which gives a much more refined way of searching.

Gate theory explained.

Wikipedia provides an explanation of the Gate theory of pain. I believe this theory has led the way to novel treatments of chronic pain such as the mirror and virtual reality treatments.

Before this theory was presented the one-way action/reaction or "alarm system" response as proposed by Descartes was accepted as an explanation of pain. This theory did not explain phantom limb pain let alone the pain of CRPS/RSD. The role that the brain plays in pain was simply not considered.

In the Gate theory the failure to control pain can be seen as "the brain being unable to deal with the challenges that a body faces."

In the article this is stated to be a "mental illness". It is widely accepted and has been proven that CRPS is not a "mental illness" in the accepted term. What the article seems to say is that the mental aspect is the unconscious brain which has the problem. Unfortunately in this instance I believe that there has been a poor choice of words. However, that aside it is a good explanation and worth reading.

You can find this article by using Google.

Saturday, December 30, 2006

Hopefully soon there will be a way to prove chronic pain is real.

Pain is one of the hidden handicaps. Many chronic pain sufferers carry the added burden of being suspected of fabricating or exaggerating their pain. Cary Goldberg of the Globe News wrote an excellent article about recent research into proving the existance of pain. As he says the "lack of physical proof of pain compounds the problem" for sufferers. Hopefully thes recent developments will produce results quickly for those of us suffering chronic pain.

Friday, December 29, 2006

Interesting article on the complex regional pain syndrome and its effect on eye, heart, hormones and dental issues.

Dr Robert Schwartz has written a very interesting article discussing the controversal issue of involvement of eyes, heart, hormones and dental systems with crps. I definitely have cardiac involvement directly caused by crps. A cardiologist and a cardiologist/vascular physician confirmed this. I have dyautonomia, labile blood pressure, chest pain, paroxymal atrial fibrulation etc all caused by a disturbed autonomic nervous system. I also have had significant problems with dental work, even minor work. Please note that my blood presure is more stable since I've been regularly breathing twice as long as in for 15 minutes a day most days. Please see previous posts. Also look at crps related articles to the left of this blog. I also can have dental work safely now if the procedure recommended is followed. Please look at the article links for articles axplaining the procedures.
My cardiac symptoms were thoroughly chesked by specialists.

If you have heart symptoms you cannot assume crps is the cause. Seek professional advice.

Thursday, December 28, 2006

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.

Wednesday, December 27, 2006

For the first time I've had one flare up settle without another immediately taking its place.

For the first time yesterday a flare up, namely the whole left side complicated by the Blue Bottle sting, resolved without another taking its place. Usually if eg my shoulder settles, the back burning becomes suddenly very intense and continues until something else takes over. So on a daily, weekly, monthly, yearly basis I've been swinging from one area to another. At the same time I have general all over pain and stiffness when I initiate movement. This stiffness is worse if I've been in one position for more than 20 minutes. So I am very restless.

Well, yesterday I was in general pain but relatively comfortable for the first time in a long, long time. I had a very pleasant day and even dozed for 20 minutes in the afternoon, sheer bliss. I don't sleep in the day as my blood pressure drops and I find it very hard to be upright without feeling dizzy and sick as it takes a long time to get it up to normal again.

I am speculating that, as the only thing that I did differently was to take vitamin C, maybe vitamin C was beneficial in preventing the transferance of pain perception to another area.

There is so much we don't know about complex regional pain syndrome. I encourage others to write down what works for you and maybe look for a pattern.

My plan is to tackle the symptoms using a combination of things eg mirrors, exercise, breathing and now vitamin C. My hope is to erode back the symptoms, or at the very least manage them better. So far it seems to be working.

Tuesday, December 26, 2006

Combination of things worked to relieve symptoms of CRPS after a Blue Bottle sting.

Today, although the red marks are still on my leg after the Blue Bottle sting, the extreme burning pain has gone. So has all the other pain and burning on my whole left side. I am amazed to again find that mirrors have helped. I've watched the mirror image of my right leg moving in a way painful for the left leg repeatedly since the sting. I'm also taking 1000mg of vitamin C in two divided doses each day as per Dr Reuben's protocols for preventing CRPS after surgery (or trauma I add in my thinking and a sting is a type of tissue trauma, I think). The reason for dividing the dose is that I think the body processes the vitamin reasonably quicky and gets rid of excess vitamin. By having 500mg morning and again at night I'm giving my body a chance to absorb more of it. I still maintain that it's best to get vitimins from food, but, as I have yet to consult a dietition I don't know how much of what to eat or drink to get 100mg. In short I wook the easy option this time.

The interesting thing about the sting on Friday was that I was struggling to walk because of a flare up in my left foot. I was really having trouble forcing myself not to limp because the pain in my foot was severe and very convincing of an injury. I had been using a mirror because I felt sure the pain was brain driven and was having some slow success. As soon as I was stung, the foot pain disappeared completely and has not returned. As I said before all the pain in my left side is gone. Absolutely amazing. Before I came accross the mirror trick I would have had pain for months or years from a single inciting incident.

It costs me nothing but my perseverence with mirrors and works for me. I suspect the vitamin C may have helped as well.

Monday, December 25, 2006

Peace, joy and happiness to all this Christmas.

I wish you and yours a truely wonderful Xmas. For those of you suffering no matter what the cause, I wish you comfort and peace. For those of you caught up in the rush, I wish you calm and serenity. Happy Xmas to all.


Sunday, December 24, 2006

Blue Bottle stings are a problem for me with CRPS.

Before I developed complex regional pain syndrome I've been stung by blue bottles, even had them wrapped around my body and had pain but no extreme reaction. Yesterday I was walking in knee deep water when I was stung. I only had a small amount of tenticles, 5 centimetres, but the reaction was extreme. My leg was on fire and is still today. The pain very quickly travelled to my groin and I was light headed. My voice changed and my tongue was thick but I could still breathe relatively normally so I didn't seek medical help. My husband looked up the latest treatment and I had very hot water put on my leg and then a very hot bath. I used the mirror repeatedly and am continuing to do so. I believe this syndrome feeds on pain and feel that the amount of pain I was feeling and continue to have is out of all proportion to what I would normally expect from a sting like this so I believe it is the product of an overly alert brain. That's why I'm using mirrors. I'll visit my GP after Xmas and see if she has any suggestions for any future problems. In the meantime I'm going to be more watchful at the beach.

Saturday, December 23, 2006

"Orchids deck the tree tops."
from "My Country" by Dorothea McKeller
"And ferns, the warm dark soil."
from "My Country" by Dorothea McKeller

Friday, December 22, 2006

Water is great for people in pain.

  • 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.

Thursday, December 21, 2006

Water's great for tree decorating Docs as well.

The soothing effects of water.

My special 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.
I hoping Santa leaves a soft rubber surf mat under my tree, the one Doc helped to decorate. This Xmas I'm planning on doing some endorphin raising and have fun, fun, fun fun.

Wednesday, December 20, 2006

To our amazement Doc, our stumpy tailed cattle dog, added his decoration to our tree.

Sunday, December 17, 2006

Antioxidants demolish free radicals - another look at eating smart.

I mentioned recently that I'm seeking a dietition's advice to discover what foods I need to eat to increase my antioxidant intake, in particular vitamin C. Other antioxidants are also important. Phenols, unique phyto neutrients found in prunes are damage preventing substances effective in neutralizing a particularly dangerous oxygen radical called superoxide anion radical. As an excellent source of beta carotene, prunes help prevent oxygen based damage to fats. As well as these benefits, potassium in prunes lowers blood pressure and fibre helps to normalize blood sugar.
Sunsweet Dry Fruits note that a recent study from Tufts University in Boston "ranked the antioxidant value of commonly eaten fruits and vegetables using an analysis called ORAC (Oxygen Radical Absorbency Capacity). Prunes topped the list with more than twice the antioxidant capacity as other high-scoring fruits such as blueberries and rasins."
So you see there are compelling reasons to have a few prunes for breakfast. I'm thinking stewed prunes and custard for dinner tonight. has heaps of information and recipes.

Saturday, December 16, 2006

Mirrors really do work.

This works for me. Seek the advice of your treating professional.

I do not use a mirror box because I didn't know about mirror boxes. I use a stand alone mirror (see photos August archives). I also use sliding wardrobe mirrors or a wall mirror I place on the floor. So long as I am able to place the mirror at right angles to my body and centered such that I can look in the mirror and see the image of one side of my body it works for me. I never look at the mirror image of a body part moving if it hurts to move that part. I may be mistaken but it seems to me to be counterproductive as I want the brain to register that I can move without pain.
David Butler, who wrote the book "Explain Pain" and who's group Noigroup sells mirror boxes and runs training world wide, emailed me saying that most research and clinical trials have been done with hands and feet. He added that there was every reason to trial it with a larger mirror as I am doing. David also said he thought that good therapists should also be using brain laterality techniques before and with mirroring as well.

If you have a physiotherapist who isn't familiar with mirror work they can access information and ask questions on a forum for therapists at the noigroup web site.

The mirror trick works. You may not feel any different immediately but the more you do it the calmer things become. As far as the back goes, I use it for one sided flare ups and it has the added benefit of calming things over all.

It costs me nothing. I do it anywhere there's a suitable mirror and it works for me. Seek professional advice before trying something new.

Friday, December 15, 2006

Remember to breathe.

"Remember to breathe," my physiotherapist said this morning. I realised I was holding my breath while trying to balance on one leg (balance exercises today). This simple statement made me notice that I was also shallow breathing and was generally anxious as I'm having another right side flareup at present. You may remember previous posts where I'm mentioned the benefits of oxygen and breathing well. I already am experiencing the benefits of practising controlled breathing by establishing normal breathing and breathing out twice as long as in. This activates the parasympathetic nervous system and has a calming effect. Research suggests that doing this at least three times a week will overall reduce high blood pressure. (see crps links) I don't have high blood pressure as such but my blood pressure would wildly fluctuate curtesy of an over sensitive autonomic nervous system. I practice this type of breathing most days and have for the past couple of months. My blood pressure is now more stable and any fluctuations are not as extreme. It appears to me that it doesn't just reduce high blood pressure but by bringing about a sympathetic/parasympathetic balance calms my over active autonomic nervous system, a big plus for someone suffering from complex regional pain syndrome.

Thursday, December 14, 2006

Today being Thursday is of course market day. One coconut, date and custard muffin is enough to share.

Keeping it realistic.

A wise man recently reminded me to keep my goals realistic. Today I'm posting these photos between spells where I'm removing the skin from almonds. So I select a photo and press download, do some almonds and then come back and edit and publish. I'm blanching almonds for my Christmas cakes. I have two in the oven and I'll make another two soon. Usually I weed grass to strengthen my right hand. I posted before about my having difficulty grasping and maintaining a hold. I want a couch lawn in a small area of our back yard so I'm strengthing my hand and improving my lawn at the same time. No weeding today, however, I'm pacing myself well with the almonds as I know it is so easy to do too much with the old "pay for it later". I'm trying to be realistic (although go go go is what I really want to do). I added the countdown to Christmas to keep me motivated and happy.
I love water at play. Actually, I just love water.
Cooling off at Kings Plains National Park. This trip man's best friend stayed home so we enjoyed exploring the parks.
A ghost still walks the boards of this turn of the century building where the Mercy nuns, renouned for their teaching, nurtured many a fine young pianist.
Little Tarts and Tea"s Ann Fairbanks is one of those people you meet and wish you could get to know better. We spent a very pleasant couple of hours chatting over great coffee in the "Old Convent" at Emmaville in the New England area of New South Wales.

Tuesday, December 12, 2006

For flare ups I refer to this list of things that help to relieve the symptoms of CRPS/RSD.

As other sufferers know, symptoms can vary from day to day and throughout the day. As well as an overall plan to erode back the symptoms, I need to have strategies in place to help with the day to day problems.
Some of the things that help me are

  • mirrors (August archives photos)
  • essential oils (still experimenting but amazed so far)
  • breathing out twice as long as in (August)
  • breathing out twice as long as in to activate the parasympathetic nervous symptom almost every day (see resparate breathing machine 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)
  • chilli cream (capsaicin)
  • heat pack (September)
  • graduated repetition of movements (September)
  • pacing - move it or lose it
  • 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 - new research Dec advises 1gram)
  • eat nutrient rich antioxidant foods. Eat smart. (Nov)
  • use Prantal powder for hyperhydrosis (Nov)
  • make a list of what works for me as a quick reference. (Nov)
  • don't despair when I have a 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 - see links for research)
  • Changing thinking, not "what can be done for me" but "what I can do for myself" (Nov)
  • Eating Vitamin C rich foods up to 1 gram/day as it's the antioxidant that demolishes free radicals which cause inflamation. (Dec)
  • Understanding that while it hurts it's not necessarilly 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.

Monday, December 11, 2006

Is this the way of the future for treating CRPS/RSD?

Yesterday I posted about mirror treatment. I explained that the idea of treating sufferers of complex regional pain syndrome with mirrors came out of successful treatment of phantom limb pain. Like phantom limb pain CRPS is driven by incorrect brain messages from an unconcious brain. (We cannot control the unconconscious brain only the conscious one.)
Now scientists at Manchester University in the UK have discovered that phantom limb pain can also be alleviated using a virtual reality computer system. In a similar way to mirror therapy the brain is tricked into believing that everything is OK.
If this works then it makes sense to think that the pain and symptoms of CRPS can possibly be relieved using the same method. The real benefit to CRPS sufferers is that virtual reality brain retraining might work for central (down the back), and whole body pain. Because mirror therapy works by looking at the mirror image of the "good" side, it hasn't been useful for pain that is not one sided.

This is exciting research and offers real hope.

See CRPS/RSD related articles to the left of this blog for more information.

Sunday, December 10, 2006

What's in a name? Mirror therapy again.

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 or created in the brain 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 inflamatiom, swelling, sweating, vascular messages, colour and temperature changes. Thes 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 but it's not. 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. 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. Mirror therapy isn't the whole answer. I do physical therapy every day in small amounts throughout the day. 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 eat foods high in antioxidants (prunes are highest) to deal with the free radicals caused by stress of coping with CRPS. I am looking at ways to change my diet so that I have 1 gram of Vitamin C a day. Remember Vitiman C demolishes the free radicals involved in inflamation. I refer to my list of things that work for me when I have flare ups. My plan is to persist until the symptoms of CRPS resolve. I take one day at a time. If interested look through my blog under archives to see explanations of what I do and photos. I'm posting new links now. See CRPS/RSD related articles to the left of the blog.

Saturday, December 09, 2006

On the ground level this was the drawing room and above was th master bedroom, one of 28 rooms with 14 fireplaces.
The castle was built in 1908by Dr George Vivers at a cost of 6000 pounds and replaced the original homestead built by his great uncle, pioneer Scotttish settler, William Vivers. The oak shingled roof gardener's shed is part of the original homestead and was built in the mid 1800's.
We spent Thursday night in this magnificent, almost a century old Kings Plains Castle in the New England area of New South Wales, several hours drive from home.

Wednesday, December 06, 2006

Stand off at the Billinugel Vet's.
Click on the photos for a better look.
These pines have watched over many Christmases as generations of families come to the Bruns year after year.
Simple pleasures.

Although the day is overcast you can see how clean and beautiful the water is.

Tied off to the bridge the current puts these fishermen in just the right spot.

Tuesday, December 05, 2006

The beach below Point Danger this morning.

Monday, December 04, 2006

Could Vitamin C benefit those already suffering from CRPS?

Dr Andrew McBride of Bristol Royal Infirmary is currently doing a study to support previous research into reducing the incidence of development of CRPS post wrist injury by taking vitamin C. The study is has it's basis in the theory that CRPS is possibly partly caused by an inflamatory reaction.

At present it's now known that free radical disarming Vitamin C can prevent development of CRPS after a colles fracture. It is an antioxidant which specifically affects inflamation. As inflamation is a problem for sufferers of CRPS to me it make sense that Vitamin C could be useful to disarm free radicals and address inflamation in sufferers of CRPS.

Why do only some people develop crps and why do they develop it at the time they do?

I've looked at possible predictors for developing crps in the previous posts. Now I would like to share my thoughts on another possible factor which might explain why a person develops crps from an inciting event but not at other times and other events. In my own case I was under a high amount of stress at the time of my accident in which I broke my wrist. I had just moved house (three days), started a job in a new place (two days) and had a migraine at the time of my fall. I fell into a dark stairwell which for me was a shock, more stress. I had also been under some stress for the weeks preceding the accident. I think that I most likely had a raised level of free radicals due to the ongoing stress. I was unaware of the need to eat foods high in antioxidants to deal with free radicals and wasn't taking any vitamins or supplements. You can see where I'm going here. Is it possible that a raised level of free radicals and/or stress could be another risk factor for the development of complex regional pain syndrome after an inciting inciting event?
Something to ponder.

Sunday, December 03, 2006

Prevention better than cure again. Preemptive analgesia before surgery for people with crps.

The Reflex Sympathetic Dystrophy Association In their patient resources recorded an interview with Dr Scott Reuben, Director of Acute Pain Service and Professor of Anesthesiology and Pain Medicine, Tufts University School of Medicine. Professor Reuben talked about protocols for reducing the likelihoood of worsening or spreading CRPS symptoms in patients with CRPS having surgery. He also spoke about protocols for reducing the risk of development of CRPS in patients with no history of CRPS and having surgery.
It is thought that aproximately 20% of CRPS patients who present to chronic pain clinics have a history of prior surgical procedures in the affected area with most reports of postoperative CRPS occurring after orthopedic surgery, especially after operations on the extremities
The professor specifically mentions as well pre-emptive analgesia before dental surgery.

I received an email recently from Professor Reuben, in which, regarding my question about vitamin C and surgery, he says that they now incorporate Vitamin C in their protocols.

Friday, December 01, 2006

Prevention is better than cure in most things but especially in the case of complex regional pain syndrome.

In my last post I was looking at possible predictors for development of crps. My principal reason for doing this is to assess if my children could be at risk. In my opinion there is enough to suggest that they could possibly be at risk. Now I am determined to look at ways of minimizing any possible risk.
Zollinger PE, Tuinebreijer WE, Kreis R, Breederveld RS. Effect of vitamin C on frequency of reflex sympathetic dystrophy in wrist fractures: A randomized trial. Lancet 1999;354:2025-8. found that taking Vitamin C after surgery produced a significant reduction in pain in CRPS after surgical correction of Colles' fracture.
Those waves need controlling so my trusty stumpy tailed cattle dog rounds them up and gives them a nip at the end of the chase.
This Lumberjack cake at Pippi's 15 minutes north of Byron is to die for. Another of my favourite places.
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