Tuesday, February 27, 2007

Sticking to the plan is paying off again to control symptoms of complex regional pain syndrome.

In recent days I've been having acute nerve firing in my head. There is always a trigger for this and my strategy so far has been to deal with the triggers so I don't get the nauseating , extreme pain. In the past migraine and dental work have been the triggers for severe acute episodes. I've posted before about what I do to prevent migraine and a protocol for dental work.

You may remember I had some mild nerve firing before my recent dental check up. I didn't take precautions and had a moderate flare up. I took vitamin C for about two weeks and the firing peatered out instead of excalating.

This time I've had saw gums and pain when teeth cleaning. The pain progressed to the whole side of my face. Then the nerve firing began and quickly worsened. I couldn't think what to do at first.
Then I remembered the list. This is what I'm doing with some success.

  • I increased vitamin C in my diet and also am taking a supplement in divided doses (because vitamin C is processed quickly so dividing the dose should, I hope, give my body more chance to use it.)
  • I practise controlled breathing, breathing out twice as long as in for at least 15 minutes a day.
  • I put chilli cream on the area of pain.
  • I immerse in the salt water to activate the parasympathetic nervous system.
  • I reduced cafeine.
  • I've tried mindfulness meditation focusing on the breath (especially in bed when I can't get comfortable and certainly can't sleep for the pain.)
  • I use self hypnosis to try and lift the pain away. It works but can't sustain it for long.
  • I stay as calm as possible as any little stress or noise or vibration makes it worse.
So far I've had a few breaks from the unrelenting firing (normally every few seconds.)
Today there have been bigger gaps between firings, every 10 seconds up to a few minutes peace.

I'll stick with the plan and post of my progress. One things for sure there's no point in getting upset with this. Now, at least, with a plan, I know there is something I can do to help myself.

Monday, February 26, 2007

Ladybird in my friend's garden yesterday.

Saturday, February 24, 2007

Shells collected from our local beach.
Bird of Paradise.
Bangalow Palm flowers in the evening light.
The next few photos were taken by my husband yesterday.

Ramachandran's mirror therapy for phantom limb pain on U tube.

Mirror therapy was first described by V.S. Ramachandran, Director of the Centre for Brain and Cognition and Professor with the Psychology Department and the Neurosciences Program at the University of California, San Diego in 1953.
In Ramachandran's experiments mirror box therapy was used to relieve phantom limb pain.

Since then others have taken up the challenge. Mirror box therapy has been shown to also help relieve chronic pain and in particular pain from Complex Regional Pain Syndrome.

In Australia the NOI Group (Neuro Orthopeadic Institute) has done much work in this area and developed an inexpensive, simple, portable mirror box. This can be used in conjunction with their remarkable book, "Explain Pain". There is a link to a pod cast where David Butler, co author of "Explain Pain" talks about mirror therapy.

Mirror box therapy has really taken off in the UK as is obvious from my recent post where a major pharmaceutical company donated mirror boxes to UK pain clinics.

I placed links to a video of Ramachandran's early mirror box therapy, David Butler's podcast and the UK mirror box therapy site under "crps/rsd related articles" to the left of this blog. Click on the link to take you to the sites.

Friday, February 23, 2007

Anticipation.
The chase.
Keep your eye on the ball.
Click on the photo for a better look.

Thursday, February 22, 2007

Byron Bay is Australia's most easterly point, a very special place.
Click on photo to enlarge.
Lilting music to browse by.
Macadamia honey's my favourite.
This stall has really delicious pumpkins and spuds. Everything has been harvested the day before.
These Growers' Market tomatoes look good but taste better.

Tuesday, February 20, 2007

My "How to Cope with Pain" interview.

I was interviewed by How to Cope with Pain recently. It 's on their website today. In the interview I was asked about my experiences and how I cope with pain.

If you're interested you can read the interview by clicking on the link to the left of this blog, under "crps/rsd related articles".

Monday, February 19, 2007

NAAP Pharmaceuticals help promote Mirrorbox Therapy in the UK - WebWire reports

Mirror Box Therapy in the UK has received a major boost from NAPP Pharmaceuticals. The company usually involved in pain medications "have purchased 2,500 Mirror Therapy Boxes for complimentary distribution to pain clinics throughout the UK."

I have had great benefits from mirror therapy. Although I don't use a box, what I do is based on the same principles and it works.

I applaud NAPP Pharmaceuticals for their generiosity and forsight in promoting a therapy which really works.

I encourage pharmaceutical companies in other parts of the world to examine the research and see that this therapy fits in well with their mission to ease pain.

In Australia Noigroup.com provides thes boxes and trains practitioners in their use.
Every pain clinic in Australia would well benefit from these inexpensive wonder boxes.

To read the WebWire article, click on the link to the left of this blog under "crps/rsd related links".

A link to the NOIgroup is also in the link list to the left of this blog.

Sunday, February 18, 2007

Orchids grow well in our garden. This Adelaide Silver orchid's in bloom now.
Grazing on a sunny afternoon, in the summer time.
Is this true happiness?

"The Happiness Formula" - BBC UK article

The first link in my newly created "Articles of interest" links section to the left of the blog is devoted to happiness and the persuit of happiness.
You can watch the short videos and take the happiness test.

This site won't be active for long as the BBC is continually changing and updating their sites.

I'll be posting more happiness links soon as my plan is to "actively seek happiness".
If interested go to the left of this blog and click on "The Happiness Formula" under "Articles of interest.

New Article on "How to Cope with Pain."

I've mentioned the website, "How to Cope with Pain" recently and today I'm making it the first site on my new "crps/rsd related links" section to the left of this blog.

There's a great new article on the distinction between addiction, and dependence and tollerance.
I'm unable to take pain medication but am aware of the worries for those who do. This article is clear and simple in its explanation.

If interested go to the left of this blog and click on "How to cope with pain."
On the main page click on the article
"Are you a dinosaur who criss-crosses goat and white mosquito?"

Saturday, February 17, 2007

Each month I repost and update this list of what works for me to ease the pain and symptoms of Complex Regional Pain Syndrome.

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)
  • 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)
  • 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)
  • 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 )
  • 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.

Friday, February 16, 2007

For me it's best to vary physical therapy to avoid more pain.

Today my physiotherapist again emphasised the need to vary what physical therapy I do. I've been in a great deal more pain this week. It's been caused by overdoing sone exercises. I know it's counterproductive as I then take a while to recover. I must vary the types of exercise I do to avoid over stimulating or injuring myself. A timely reminder but sometimes I feel as though I take one step forward and two steps back.
Variety and pacing - lesson for today.

Thursday, February 15, 2007

A drop in barometric pressure causes increased pain.

Each time there is a sudden drop in barometric pressure I have deep bone pain in my wrist, the origional site of complex regional pain syndrome. I notice this in planes as well. I have it to a lesser degree in both shoulders back and right thigh.

This reminds me of the importance of weight bearing exercise and plenty of calcium in my diet to maintain healthy bones.

I'm still working on my "eat smart" plan and at present I'm eating lots of colours.

Wednesday, February 14, 2007

Fighting the brain's message "it hurts, don't move" is really hard with CRPS/RSD.

At our neighbourhood party before Christmas my foot hurt so much I had to force myself to walk. People were asking what was wrong, why I was limping. I was really trying not to limp but the pain was very convincing. The thing was I knew I'd had no injury and I was pretty sure there was nothing wrong. But the pain was acute, severe and very convincing of an injury. Try as I might to overcome the urge not to limp, I struggled to walk.

The next day I was stung by a Blue Bottle.


The extreme pain from the Blue Bottle sting was overwhelming and dominated my perception of pain. Amazingly, the foot pain was gone!


I had been right about the foot pain. It was a message from the brain saying there was pain and that something was wrong and that I should protect the injured part. I can now usually recognize that the extreme pains are an incorrect message. It is very, very hard to ignore that message but I know I must. Neglect symptoms come from protecting and not using body parts that are very painful and that our smart brain tells us is best practice to rest and protect.

I believe with the condition Complex Regional Pain Syndrome I must rely on what I know and keep active. For me bed rest is the worst thing. I know with most of my pain there is no injury, and that rest and protecting behaviours such as limping are counter productive.

So for me it's a case of, "It hurts so move it!"

Tuesday, February 13, 2007

New beginnings in our garden.

Monday, February 12, 2007

What is Complex Regional Pain syndrome?

In my opinion it's a shitty diagnosis. Complex regional pain syndrome, formally known as reflex sympathetic dystrophy, is the name given to a collection of symptoms the worst of which is continuing pain out of the ordinary for the event that caused it.

Abnormal changes in temperature, colour, sweating, hair and nail growth, in addition to ongoing pain set crps apart from other pain syndromes. The initiating event may be as simple as hitting your elbow. Light touch is unpleasant or painful, touch that might normally be painful is excessively so.

Early diagnosis and treatment usually results in a better outcome. In many sufferers pain persists for years. This blog is an attempt to remind myself about what works for me to help in relieving the pain and symptoms.

Sunday, February 11, 2007

Markets by the crystal waters of the Brunswick River.
Click on the photo for a better look.

Comedy Festival in Bangalow yesterday. Laughter is good for the soul.
I am actively seeking happiness

Saturday, February 10, 2007

Good reasons for me to have extra vitamin C.

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.



I intend next to discover how to increase Vitamin C in my diet. This then I will to add to my "eat smart" plan.

Friday, February 09, 2007

Recovery was quicker after reaction to dental treatment.

I recovered remarkably quickly after a nerve firing reaction from a dental check up and clean.

This is the only time ever that nerve firing has stopped within a few days. Usually it's weeks and then only peaters out slowly.

The nerve firing this time was not extreme and excrutiation as in the past. It was spasmodic and not as intense but nonetheless painful and unsettling. I was quite anxious that things would get much worse.

What I did differently from any other times was have more vitamin C in my diet and also took a vitaminC suplement broken up into divided doses throughout the day. I'm continuing with that for another week or so. It's purely speculation on my part but I suspect the extra vitamin C may have made the difference. As of today I have no nerve firing in my head. It's such a relief.

Wednesday, February 07, 2007

Dental work and CRPS

I thought I was making the right decision not to have analgesia with my check up. As there was no work to be done and the dentist just cleaned my teeth I mistakenly thought I wouldn't have a problem.

Unfortunately a nerve in the back of my head and another on the right of my face began firing a few hours after the check up. I already had some nerve sensitivity and mild firing before I went. I should have taken the precaution of having the area deadened. In future I'll be more cautious.

I started taking extra vitamin C,as well as an increased amount in the diet. I think this has saved me getting extreme nerve firing. It started, like touching a raw nerve with a pin. Fortunately this time the firing is only spasmodic and so is tolerable. The good thing is it's not getting worse.

I now just need to remain calm and wait for the firing to peater out.


Next time I'll ask my dentist to stick to the protocols that we know work to prevent problems.

Monday, February 05, 2007

I need to take pecautions when visiting a dentist in order to prevent worsening symptoms of Complex Regional Pain Syndrome.

My dentist follows protocols to prevent flare ups of CRPS. He uses cream to deaden the area before injecting. Then uses a non adrenaline local. He also injects local again at the end of the treatment which is kept short.

I'm off to the dentist today and I already have some nerve firing in my face so fingers crossed all goes well. I have a theory that a local anaesthetic may stop nerve firing so this appointment is timely.

Friday, February 02, 2007

Dr Lorimer Moseley was interviewed recently about current and future trends in pain management.

A pain management Psychiatrist, from How to Cope with Pain in the US recently interviewed Dr Lorimer Moseley, the co-author of "Explain Pain". Doctor Moseley explained his three areas of research and and discussed his graded motor imagery program as well as future trends in pain management. This refreshing and informative interview is well worth reading.

I strongly recommend you also put How to Cope with Pain site in your favourites. It's up to the minute information cuts through the minefield that is the world wide web. Added to this are her inciteful interviews.I'll definitely be checking for regular updates.

Here is the interview with links to more on the subject.

http://www.howtocopewithpain.org/blog/35/interview-with-dr-moseley-graded-motor-imagery-treatment/#comments


www.howtocopewithpain.org


Thursday, February 01, 2007

Eating food with a high Oxygen Radical Absorbancy (ORAC) score in an effort to "eat smart".

Oxygen Radical Absorbance Capacity (ORAC) is a standardized test adopted by the U.S. Department of Agriculture to measure the Total Antioxidant Potency of foods and nutritional supplements.

This ORAC score reflects the speed and strength of the antioxidant to do its job in demolishing free radicals.
ORAC is a way to measure how many oxygen radicals a specific food can absorb or demolish.
The more oxygen radicals a food can absorb, the higher its ORAC score.

In general foods with a high ORAC rating are colourful, bright reds, greens, oranges, blues, purples, yellows, and oranges eg strawberries, prunes, spinach, blueberries, eggplant, carrots and oranges.

I plan to consider this ORAC score as well as amounts of vitamin C in my planning what of foods are best to consume to "eat smart" for a person with Complex Regional Pain Syndrome.

For today I just plan to eat more colour food each day in a range of fruits and vegetables.

Hand exerciser - simple and inexpensive.

I wanted to tell you about something you could make and carry with you that you can use to gently exercise your hand and it doesn't cost much at all. I have used it continuously for over 2 years for my hands and find it fantastic as you can use it both gently and stronger if you wish.
Its a balloon filled with playdoe. All you need to do is open the neck of the balloon (you might need to get someone to help you do this) and put as much playdoe in it depending on how big you wish it to be...tie a knot in the neck and start squeezing!
Its the same principle as a stress ball but heaps cheaper. You can also fill a balloon with flour if you havent got playdoe, but the flour doesn't work quite so well. (if using flour i would actually use 2 balloons cos if you get a split in it...).

This great idea came from Sonya in New Zealand. Thank you Sonya.
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