Wednesday, January 31, 2007

I bought these dried Goji berries locally yesterday. About 2 tablespoons cost A$3.00.
Asian food stores, I accidently discovered, sell "wolf berries" for less than half the price of some other stores.

Again I'm reminded of pacing and the importance of staying focused.

I've had a lovely couple of days with our family and friends visiting and got swept up in the the enjoyment of conversation and business that goes with visitors. I got carried away and didn't pace myself. I also didn't keep up the shoulder/arm exercises for a few days and only did mirror work a few times.

Yesterday whlie we chatted with friends I could feel the pain and hypersensitivity spread from my left shoulder down the arm and then upwards and into the side of my face. With these uncomfortable feeling goes muscle spasm and s strong altered perception of that side of the body.
It feels as if it's swollen but when I look I see there is no swelling. I need to keep looking to give my brain the right message.

It's straight to mirror work for me and paced physiotherapy exercises. I know I'll deal with this flare up because I have before.

This aging reminds me how important being focused is. Even though other things are happening I need to pace and not overstimulate. I need to keep up the exercises.

Yesterday I bought dried Goji beries. I haven't worked out how much vitamin C in them yet .

I'll post more when I've investigated further.

Monday, January 29, 2007

Same stall, more creations.

Bangalow markets on yesterday.
Click on the photo to enlarge.
Blue Tongue taking advantage of the shade on this hot day.
Blue Triangle butterfly graced my garden with its presence.

Sunday, January 28, 2007

Referring to a list of what works helps in times of flare ups from 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.

Saturday, January 27, 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.

Friday, January 26, 2007

Prompt reply and very helpful advice from WHFoods.

A big thank you to George Mateljan and collegues at WHFoods. They provided the information I was seeking and went further giving me links which will allow me to find out further information myself. I highly recommend a visit to their excellent site at

http://whfoods.org


Thursday, January 25, 2007

Eating smart - putting plans into action.

Today I spent time with a dedicated dietitian. I told her about my plan to increase antioxidants, in particular vitamin C, in my diet. We both discovered that it isn't easy to find the information I want but I've come home with a list of foods in serving size stating the amount of vitamin C, and also giving mg of vitamin C per 100mg of food.

This list contained. many processed food or cooked food. I would have liked more, and more varied fresh food. However it's a beginning.

Later today the dietitian emailed me about recent research listing over 1000 common foods and their antioxidant values. This is what I'm after.


Now I need to know how to get a copy of the results of this study so that I can look at what I do now and how I can adapt what I already do so that I can have a more nutrient rich diet.


This Boobook was in our garden this morning.

Monday, January 22, 2007

The virtual body in the brain.

Section 4 in "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 upon input for information. We become more sensitive to pain and the area of pain in the brain "the virtual body" becomes "smudged" or less clearly defined. This means that instead of pain being confined to an area, eg the shoulder, the pain spreads beyound the original site.

Mirror therapy helps the brain to clear this smudge so that the brain can better define the origional pain site. This explains why when my left shoulder flares up the pain very quickly travels up and down until the whole left side is involved. This also explains why when I do mirror therapy the pain gradually recedes back to the shoulder which is the origional site of pain.

The more I use the mirror, the less pain and symptoms until finally the flare up is resolved.

Mirrors really do work!

Please note that on going physical therapy is still essential to regain strength and tone to prevent further injury and flare ups. Alway seek the advice of your treating professional. What is written here is what works for me.



This is an octopus.

Saturday, January 20, 2007

Choices. How we look at life.

Rainbow sent this link about how we can choose to see our day.
Click on the link under "articles of interest" to the left of this blog.

Friday, January 19, 2007

Actively seeking happiness.

It is very easy to be weighed down by what we face on a daily basis. A wise person posted on the CRPS/RSD google group I closed recently that to seek happiness she hugs someone she loves.

This really made me think that because of all we have to deal with, it's not enough to wait for good things to happen to us. I plan to reach out for happiness and focus on the good and beautiful things in life.


If you are interested in joining this group you put your email address in the box at the top of this page or visit us by clicking on the link at the bottom of this page.

Washed up on our beach yesterday.
Opportunistic Goose Barnacles.

Thursday, January 18, 2007

Soaring high today in Lismore.
Click on the photo for a better look.

Wednesday, January 17, 2007

Limb laterality recognition program.

I have problems with left and right. I also have problems with proprioception, knowing where the body or parts of the body are in space. Close your eyes and touch your nose. You need a sense of where your nose is in relation to your body to do this. Sometimes I lose this sense. On occasion I've not been able to touch my left hand with my right hand unless I could see it. I correct this by looking while I repeat the movement over and over till my brain learns again where things are.

This failure to recognize body parts is apparently part of this condition and I think may partly explain the "neglect" symptoms that are common with sufferers of complex regional pain syndrome.

Lorimer Moseley devised, after research, a program called Recognize. It is a measurable, progressive self-management computer program during which recognition of limb laterality is tested and treated.

The dedicated physiotherapist who gave me the "Explain Pain" book is going to help me with the program which I hope to start in coming weeks.

I'll post my progress with this program.
Waiting

Tuesday, January 16, 2007


Surf's up!
Yes, the water felt as good as it looks.
Water really works for me.

Monday, January 15, 2007

Complex Regional Pain Syndrome, formally Reflex Sympathetic Dystrophy explained.

What is crps/rsd?

In my opinion it's a shitty diagnosis, a burning ring of fire. 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 about what works of me to alleviate the pain and symptoms of crps/rsd. I refer here particularly in extreme flare ups for reminders of what I can do to help myself. In a sense it has empowered me. I encourage others to make a list of what works for you so that you too can have something that you can do when you are overwhelmed by pain and symptoms. This blog works for me.

Sunday, January 14, 2007

Benefits of water again.

Tomorrow is our 36th anniversary. We're going to a resort near here called Salt. We'll take full advantage of the lagoon and resort pools and especially the rock spa. Can't wait!

Water is great for so many reasons.

It

  • 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!

Saturday, January 13, 2007

Jason from San Diago has a RSDS/CRPS news blog.

Jason just posted on my blog about his news blog. Jason's mum has CRPS and he is trying to get the word out and help sufferers. His site is informative and really worth a look.
Check the comments for his address.

Remember to breathe.

With the Xmas excitement and forgetting to pace and increased symptoms of CRPS, my blood pressure is more unstable again. I've had wildly fluctuating blood pressure for several years due to dysautonomia caused by this syndrome. In recent months I've managed to reduce both the extent and frequency of the swings thus stabilizing my blood pressure.

This stability was brought about by breathing out twice as long as in and doing so for 15 minutes each day. UK research supports this. The long out breath activates the parasympathetic nervouse system thus bringing about a balance between the sympathetic and parasympathetic nervous system.

Of course with Xmas madness I didn't keep this up and as with other things I'm having to work at controlling the symptoms again. I know this breathing works for me as I've taked my BP before and after doing the breathing and noticed a significant drop in pressure after 15 minutes of this type of breathing.

Friday, January 12, 2007

Rainbow's easy prune recipe.

Rainbow from the US posted a comment with this great recipe for prunes using a slow cooker or crockpot. I'm going to collect the ingredients and give it a go. Thanks Rainbow.

List of Ingredients
3 cups quick-cooking oats
2/3 cup honey (clover)
1 cup coconut flakes
1/4 cup oil
1/8 teaspoon cinnamon
1/8 teaspoon nutmeg, freshly ground
1 Cup chopped Pecans (unsalted)
1/2 cup dried raisins
1/2 cup chopped SUNSWEET DRIED prunes

Recipe
Combine all ingredients except cranberries/raisins and dates in the crock-pot. Cook on LOW with lid slightly ajar for about 4 hours, stirring occasionally. Cool and add fruit. Store in airtight jars. Use within 1 to 2 weeks. Makes about 6 cups.

I stored in vacuum sealed Food saver bags

I'll take a photo when I make it and post it here.

Here's my list which is really helps me stay focused.

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)
  • Listen to music because it can change perception of pain. (Jan)

  • 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.

Thursday, January 11, 2007

Keeping this blog diary of what works for me keeps me focused on positives and is a ready reference for times of need.

Writing this blog has not just provided a great distraction from the symptoms of crps, it also helps me keep focused on what is working.

As with many sufferers of pain, I don't sleep well and feel dumbed down by poor concentration and memory. I look back on what I've written and remember to use some of the things that have worked especially when I have flare ups and I feel like desparing and can't think what to do. My wonderful physiotherapist said that although things are often bad, I'm recovering more quickly, and she was right. Instead of weeks and weeks, sometimes years of flare ups becoming chronic, I can now pare back the symptoms.

When you are sick with the pain etc it's hard to focus and think what to do to calm things. There is no magic pill. It requires effort. I can now go to my blog and know I'll find something to help. I encourage anyone reading this to jot down somewhere what works for you and then you can have something to fall back on in times of need.

Wednesday, January 10, 2007

UK Dr Ilan Lieberman is encouraging interest in Mirror Therapy.

Dr Ilan Lieberman is Consultant in Pain Medicine and Anaesthesia at the University Hospital of South Manchester (UK), which is an NHS Foundation Trust.

He developed an interest in mirror therapy following a session on CRPS during the International Association for the Study of Pain in Sydney 2005. Run by "Explain Pain's" Lorimer Mosley, UK specialist Candy McCabe and Germany's Prof Ralf Baron, he found it was an inspiration.

Back in the UK, Dr Lieberman's results have so impressed him that he is now involved in establishing joint research with the Advanced Interface Group at Manchester University in 3D virtual reality environments.

I applaud the work of Dr Lieberman and his colleagues in thinking "inside the box".

Mirror therapy is cheap, simple and it really does work!


You can find his site at www.mirrorboxtherapy.com

Tuesday, January 09, 2007

It's really hard to get the balance of "enough" and "too much - pay for it" right.

I am the last person to be sanctimonious about doing all the right things. Managing the symptoms and pain of complex regional pain syndrome is hard work. It's too easy to think "just get on with your life". This doesn't work for me and I suspect a lot of other people. Getting the balance between doing everyday things and physical therapy and social and other family activities is almost walking a tight rope. I don't like to have to pace myself, even though I know it's the best thing. I am embarrassed when I lose concentration when people are talking to me. I don't want to tell people "don't overload me with too much information. Take it slowly and have breaks so I can absorb what you say." I feel dumbed down and I don't take medication like many others. It must be so much worse for them. Like most if not all of us, I'm very much over this.

I might look at the list again and see if I can get focused. Even though I'm a bit down today, I know that I'm coping better and that the mirror work I'm doing really does work.

Sunday, January 07, 2007

Having a ready checklist of things that work helps in flare ups with complex regional pain syndrome.

I'm now in the "done too much, pay for it" predicament at the moment so am glad I wrote this checklist. It should help me get through this flare up. As other sufferers know, symptoms of complex regional pain syndrome can vary 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 September)
  • butterball bath bomb (September)
  • water relaxes, calms,slows and improves breathing, helps sleep (September)
  • Caring Doctors (September)
  • Letting go of worries and avoiding stress (October)
  • Actively seeking happiness (October)
  • I will take vitamin C if I must have surgery as a precaution. (November)
  • eat nutrient rich antioxidant foods (November)
  • use Prantal powder for hyperhydrosis (November)
  • make a list what works for me as a quick reference. (November)
  • don't despare when I have flare up. Refer to the list. (November)
  • 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.

Saturday, January 06, 2007

Complex Regional Pain Syndrome explained again.

In my opinion it's a shitty diagnosis, a burning ring of fire. 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 pain and symptoms.

Friday, January 05, 2007

Same but different - reinforcing the "it's ok" message.

I'm reposting this from November archives. Please click on 2006 and then click "November" to see photos that go with this post.

After I do an exercise looking at my mirror image of my pain free side, I find a way of doing the same movement with my painful (arm, leg etc) but doing it in such a way that it doesn't hurt. At present I'm working on my left shoulder. I watch the mirror image of my right arm being raised and lowered (something that causes pain in the left shoulder if I do it with my left arm). Then I lie on the floor on my back and raise my arm from my side up and over to above my head. Gravity helps with this movement and is not painful.

This is the same movement only a different body position. I lay across a table or the kitchen bench and starting with my arm stretched back I lower it and then raise it so that it's horizontal. If I was in a pool, I could float face down and do the same movement supported by the water. Each Time I perform the movement without pain I'm allowing the brain to know that "it's ok". The more and varied ways I use to give the same message, the better chance I think I have of ridding myself of pain.


Adding music is another option for doing a same but different exercise.

Music can reduce the perception of pain.

There have been various studies which lend weight to the theory that music can reduce the perception of pain in sufferers of chronic pain. The BBC News May 2006 reported a good article outlining research with comments by various pain experts.

David Butler and Lorimer Moseley's book "Explain Pain" suggests that you do a normally painful movement in a non painful way in a variety of states, eg when you are hot, cold, happy etc. It is suggested that each new experience of doing the movement without pain or with little pain trains the brain that the actual movement is ok.

I think that the idea of music providing a distraction from pain could work well with the suggestion of moving the painful part in a non or minamally painful way.


Thursday, January 04, 2007

Benefits of nano patches for drug delivery.

You may wonder why a person who says they cannot tolerate drugs is interested in this new way of drug delivery. Importantly for sufferers of complex regional pain syndrome, the technology is non invasive, needle free. I think that using this technology specific areas could be targeted. At present if you take a drug for eg pain, you don't just get pain relief. You get a whole range of sometimes very unpleasant side effects. I'm thinking that if the specific problem can be targeted it would stop the complication of systemic drug side effects and reactions. This really interests me.

Wednesday, January 03, 2007

Physical therapy is most important for sufferers of complex regional pain syndrome.

I know that because of pain and stiffness I move differently and have altered posture. I do daily exercises to strengthen and tone weak muscles and to improve balance and posture. Most important with this syndrome are pacing and setting realistic goals. Overdoing things means a long time recovering which is counterproductive.

I've read that we should have our pain reduced so that we can tolerate physical therapy. This sounds good in theory. I don't have that option so I exercise with some pain but stop if the pain becomes extreme because again it's counterproduceive. I'm convinced that the focus should be on exercise as the most important thing. Dealing with pain is a bonus. Mirrors are very effective for this.

There are many people who can no longer tolerate drugs for pain and after trying different drugs and combinations end up devastated when told, as I was, to just live with it and look for alternatives as no more can be done to help.
It is my belief that with this syndrome the brain overrides the benefit of the drugs. More and more are need to get the same benefit. Then combinations are tried. This treatment is all in good faith by caring and concerned doctors.


Trouble is I think the brain is in control here and overrides the benefits because it has a fixed perception of pain.

In fact, as apears to have happened with me, the brain can decide that a drug is a threat and causes the body to have extreme reactions.

There are different styles of physiotherapy. I've found my physiotherapist who teaches me ways of moving, breathing, and exercises is the best for me. I was seeing a manipulative physiotherapist who was excellent and really knew the human body . However that style of physical therapy caused me more pain. That therapist has since been trained by David Butler and now povides a range of therapies.

I've put a link to the left of the page to a series ofn short videos of examples of physiotherapy for complex regional pain syndrome. It is best to seek professional advice.

I've also put a link to the noigroup physiotherapist discussion board. There physios discuss various problems and give peer advice. It is interesting and informative.

Tuesday, January 02, 2007

There is world wide interest and research into relieving pain using a mirror.

This simple, quick and effective drug free treatment for chronic pain is gaining momentum world wide. In Australia there is professional training in methods of mirror therapy. The NOI group in Australia has ongoing product development to support the mirror work. Please see links to NOI group and pod cast of mirror box therapy.

In the UK there's also much interest. The Royal National Hospital for Rhumatic Diseases in Bath has a training sesson for Allied Health Professionals and Nurses on assessment and treatment of complex regional pain syndrome with workshops on Mirror Visual Feedback Therapies. This is on 8-9 March 2007. Please see link to the left of this blog.

The Netherlands has a trial to test the pypothesis that mirror therapy stimulates cortical representation of the upper extremity. This trial concludes in April 2007.

Again I encourage researchers to go beyond the hands and feet with this treatment.

I've personally had great success with reducing the pain on one whole side. Over time the pain became confined to a shoulder instead of from foot to head (including dental pain). Then with further mirror work I succeded in stopping the flare up on that side. Recently I managed to reduce and finally resolve the extreme burning pain after a Blue Bottle sting caused a fare up.

I took vitamin C 1000mg in divided doses after the sting. That was the first time I've resolved pain using mirrors where I didn't have an immediate flare up in another area. I actually had two days where I just had general pain. It was a great relief.
I took vitamin C because of recent research about preventing CRPS symptoms after trauma
.

Monday, January 01, 2007

As the song says, "You've got to move it! Move it!"

Someone posted on the OZ RSD forum recently that quote from a well known song. I was reminded about how important this is and so true. Yesterday when I was carrying my surf mat the short walk from the car to the beach, I was struggling to hold it with my left arm. I've successfully stopped the pain of rotator cuff tendinitis in the left shoulder and because of Xmas and the lack of pain drawing my attention to the area, I had lapsed in doing shoulder strengthening exercises. It's not enough to just keep busy and moving, I realise how important physical therapy is. I need to do specific strengthening exercises to regain muscle strength and tone. My physiotherapist guides me with this. So my New Year's resolution is to "Move it!" responsibly.
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