Tuesday, October 31, 2006

I just love the colour of the water on days like this.

This fellow's enjoying our magnificant day.
There were heaps of Eastern Water Dragons basking on the rocks at Point Danger today when we went 25 minutes from home to the Tweed and Gold Coast.
Click on photos for a better look.
Marshal's Creek in front of our little local trading post and Pippies restaurant.

In the battle against the symptoms of complex regional pain syndrome staying focused helps with flare ups and set backs.

It's easy to lose the plot and get depressed when, just as I think I'm getting somewhere things get catostrophically worse. I notice that if something triggers a flare up in one area the symptoms quickly extend until they involve a whole quadrant or side. Last Friday my physiotherapist very wisely calmed me by explaining that as I've had some success with symptom control (mirrors, breathing, water etc) then the recovery time after flare ups should get less. This, thank heaven, has proven to be the case. Last week just doing 0ne set 15 shoulder strengthening exercises with a rubber band tied to a post after a lovely day orchid watching triggered a major flare up. Pain, nerve firing, hypersensitivity, sweating, colour and temperature changes etc were overwhelmingly present in not only the left shoulder but the whole left side and right side from the hip down and included the right hand. It was hard to see the the light at the end of this. My amazing physiotherapist was right. I had to pay careful attention to pacing but using a strategy of first mirrors, breathing and water only and later beginning very slowly exercises as the symptoms pared back I now feel on top of things again. I need to think smarter about what I do. It's a constant battle, one I plan to win. Wish me luck.

Sunday, October 29, 2006

Changing the way the brain thinks - is this the way forward in my managing the symptoms of complex regional pain syndrome?

I'd found information about "the virtual body" on the internet, but until I read Dr Lorimer Moseley and David Butler's book "Expalin Pain", I hadn't realized the vital part the brain plays in our perception of pain. It's helped me understand better and change my focus from "what could be done for me" to "what I could do for myself". I encourage anyone suffering chronic pain to seek out the book and read for yourselves. Australian libraries should have it. I've been told some physiotherapist will lend it. Information on the book and other research can be found by googling "explain pain moseley", or "the virtual body", or "treating pain with mirrors". http://www.noigroup.com.au has example pages and other information. I think the original research was done in the UK and published in the New England Journal of medicine in early 2003 but there is no doubt Australian physiotherapists have embraced the new approach to understanding and pain management.
Shedding bark makes way for a bold and beautiful future.
Paring back the symptoms and stressors which ramp up the pain of crps/rsd hopefully will present opportunities for new beginnings.
Simple pleasures.

Another reminder that water helps relieve some symptoms of complex regional pain syndrome.

The flare up I've had in recent days has reminded me how much water helps to relieve symptoms.

I really love being in water. My special physiotherapist explained that the pressure of water helps to bring about a balance between the sympathetic and parasympathetic nervous systems. I think it's because it calms the sympathetic system. She said water's best for this condition at 33degrees. I know 22-24 degrees is less than ideal but I love swimming in summer and I figure the endorphin raising power of having fun wins out. When it's still too cool to swim and as there is no heated pool nearby, I soak in an epsom salts bath. While in the bath I breathe out twice as long as in which activates the parasympathetic nervous system adding to the benefit from water pressure and warmth for circulation.

Another thing I've discovered about water is that if I'm having whole body nerve firing and I drink a full big glass of water, it settles. I'm not sure why but it works for me.

Saturday, October 28, 2006

CRPS/RSD Managing the symptoms and pain with an overall plan and taking one day at a time.

Each day is different for me with this complex pain syndrome. In fact, as other sufferers know, symptoms 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)
  • distraction (September archives)
  • magnesium for muscle spasm (September)
  • fish/fish oil for inflamation
  • beetroot for liver protection and antidepressant
  • isometric exercises to reduce pain (September)
  • epson salts warm bath (September)
  • chili cream (capsaicin)
  • heat pack
  • graduated repetition of movements (September)
  • pacing
  • move it or lose it
  • deflated ball gives a great massage (see photo September)
  • butterball bath bomb
  • water relaxes, calms,slows and improves breathing, helps sleep (September)
  • Caring Doctors (September)
  • Letting go of worries and avoiding stress (October)
  • Acitvely seeking happiness (October)
  • 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, October 27, 2006

Pacing is important in controlling the symptoms of complex regional pain syndrome.

My suffering today brings home to me the importance of pacing and not overdoing things. I now recognize warning signs but don't always pay attention. For me the warning that I must stop is a general agitation and all over burning as if I have a fever. Twice lately I've ignored the signs and ended up with flare ups in my shoulder driven left side and back driven right side. I realise the right thing to do would have been to stop, breathe out twice as long as in, take an epson salts bath, apply chilli cream and a heat pack and of course mirror exercises. The frustrating thing is that I just want to get on with life and put fun in there. As I've said before it's a fine line between enough and too much/ pay for it later.

Great physiotherapists are one of our best assets in overcoming symptoms of complex regional pain syndrome.

This morning I see my special physiotherapist. She's special because she considers the body as a whole and works on ways to activate the parasympathetic nervous system to bring about a balance between it and the sympathetic system.

Thursday, October 26, 2006

We often see pelicans on the pylons in front of the Brunswick Heads Fish Co op. A great place to destress on the way home from the Thursday Growers' market at Byron Bay.

Wednesday, October 25, 2006

My husband caught several flathead at this spot on the sand banks.
In our tinny on the Brunswick River sure beats staying home because of the pain.

Pleasure distracts and detracts from pain.

Today I'm putting my plan into action. We've got our tinny out and we're going fishing and bird watching on that beautiful Brunswick River I posted photos of yesterday. My plan is to actively seek happiness. More photos coming.

Tuesday, October 24, 2006

CRPS/RSD a burning question.

This morning my shoulder finally felt almost normal. Watching my non painful side exercise in the mirror such that it appears my painful side is moving has really worked for me again. I can stand clothes and am able to do things but no sooner did the left side symptoms settle than the back fired up again. Is it that as one area calms another takes over? Perhaps standing watching birds in the beautiful Brunswick River was the trigger. I've tried a warm epson salts bath followed by chilli cream and a hot pack. Although these helped, my back continues to burn. I felt anxious and as though I had a fever when we came home this morning and should have taken that as a warning and rested. It's very easy to know the right thing to do and another to do it.
The Ruddy Turnstone's one of our overseas visitors. Sitting on a wall watching our beautiful birds distracts and relaxes lessening the pain of complex regional pain syndrome.
Click on photos for a better look.
My favourite bird.

A crescendo of crashing waves while the boardie's focused on his next move.
Great spot for twitchers.
A snorkler spotting fish. I plan to do that when the water is warmer as part of my endorphin rasing fun stuff.
Our beach from the Bruns Wall.
The beach our side of the Brunswick Heads North Wall.

Monday, October 23, 2006

It's a dog's life.
It's still a bit overcast here but man's best friend thought it was just right.

I'm in pain but I keep active so why are my muscles weak?

David Bulter and Lorimer Mosely's book "Explain Pain" gives a good description of what happens to muscles when the brain says pain. As I understand it long muscles become activated when the there is pain. In the short term this is very effective because it prepares us to take action. However if the pain message continues the long muscles tend to contract and shorten which has the effect of weakening the short muscles. I think that's what happening with my shoulder (rotator cuff tendonitis. Yes another 'itis'). I can feel my muscle spasming and tending to stay contracted for longer and longer periods. Yesterday I was experiencing a lot of shoulder pain and spasm. I used the mirror exercise repeatedly throughout the day and by late last night the pain was much less. Last night I put the oil which energises me on my feet. I took a long time to go to sleep but eventually slept reasonably well and woke alert. This morning the shoulder pain was all but gone. It came back today while having a cuppa with friends at home. Too much sitting and not changing posture etc aggrevated it again. I've used the mirrors once and will keep repeating till it eases off again. This certainly is a complex regional pain syndrome.

Sunday, October 22, 2006

We walk a fine line in management of symptoms of this complex regional pain syndrome.

Yesterday, the arm exercises that were beneficial on Friday set off a chaotic chain reaction of symptoms which started in my left shoulder and quickly progressed down the arm and left trunk. I did exactly the same exercises for the same number of repititions. The only difference was I'd had a big day on Friday and I was generally in pain with the shoulder noticably uncomfortable. I was allert and focused (due I think to the oil treatment from the night before) and I'd put the general pain down to the inclement weather. I misread the symptoms. Movement is imperative but it's very difficult to get it right. It doesn't take much to tip me over the edge from enough to too much. Again I felt like tearing away my flesh in my shoulder, an extreme version of throwing back the blankets. My rational mind knows that the pain serves no useful purpose. I can't pop a pill so I practised parasympathetic activation breathing (in and then out twice as long as in). Then I remembered to use the mirrors. Each time I do this I have in the back of my mind that it can't work or that this time it won't work and that in the past I must have imagined that it worked. As at other times where my shoulder (a long standing problem) is concerned there was no immediate change in symptoms. However after a while I noticed that the muscle spasms had eased. I repeated the exercise with the mirror a number of time and after a while each time there was a gradual improvement. What seems to happen is a paring back of symptoms and reduction in the area of pain until again the pain becomes confined to the shoulder. My rational mind knows that if I keep working at reducing the symptoms eventually there'll be an improvment overall. If the pain becomes less some of the other things like labile blood pressure and reflux will settle. That's the plan. For now I am confronted again with the old "do too much, pay for it later" story. Well, I'll just have to focus on doing it smarter. Go to the left of the blog and click on archives August to see photos of what I do with mirrors.

Saturday, October 21, 2006

Oils again.

Last night I used 3 drops of the oil that I first was given and I had a reasonable night still waking often but woke this morning early and feeling better. Although not raring to go as I was the first time I don't feel tired and am quite alert. (I can type this today without a thousand mistakes.) The dose last night was three drops rubbed into my feet. The other times I'd had five or seven drops. I am pleased to be able to concentrate better today especially as I have the usual added pains from an overcast day with barometric pressure changes and a drop in temperature. As other crps sufferers know, change, especially sudden change, causes an escalation of symptoms. It seems that the brain treats change as a threat and responds with fight/flight responses. The challenge and the solution, not simply, is to retrain the brain.

Interesting pubmed reaearch information about complex regional pain syndrome.

This site has current research information about crps.


Friday, October 20, 2006

It was in this area that we were hoping to find a very rare orchid.
Another small orchid.
One of the miriad of tiny orchids.
Looking down.
View from the lookout.
Intrepid orchid watchers.

We haven't had much rain but Minion Falls still looks beautiful.

Click on photo for a better look.

Essential oils again.

Well I thought last night I'd used the oil after which I sleep well and wake focused and energised, only this morning I had to force myself to get up. I was tired and disappointed because I was looking forward to being with it today. We had planned to go orchid watching at Minion Falls, a short drive from here. Some time later I realised I accidently used the "sleep" oil instead. I've decided the "sleep" one isn't for me as I get too much of a hangover effect. Tonight I'll be more careful and I'll write tomorrow about the effect I have tonight and tomorrow. I'm posting some pictures of where we went. It was a lovely day and I was determined not to let a bit of tiredness spoil it.

Monday, October 16, 2006

Sunday was a memorable day in Byron Shire with the Billinudgel Pub turning 100.
We dropped in for a drink to celebrate.

In peaceful contemplation at one with nature.
Colourful local entertainer who is a regular at the Buddha Bar.
Taste of Byron on Sunday. We had Thai spring rolls, yum cha, spicy chicken with mango chutney and tagine of lamb and potatoes. It really was a showcase of local food, and beers.

Essential oils again.

My friend who really knows her oils put some "valour' on my feet again on Saturday. Immediately my feet became warm and red. Her gentle massage may have caused that. Then my whole body became very warm, almost uncomfortably so. She put another oil behind my neck and I cooled immediately. I don't know why my body responds so well to oils. That night I slept most of the night although I woke several times. Sunday morning I woke at 5am and was really allert. I had heaps of energy and was focused. This is the same reaction as last time. I did heaps of things I would normally be dragging my feet to do. This lasted most of the day and I still wasn't exhausted at night. I put an oil that helps with sleep on my feet last night. I slept but dreamed all night and woke very tired. I'll post again after the next treatment with "valour". The result was amazing. I really think that oils are not to be messed around with and professional advice is strongly recommended if you think they might help you. Some oils can have harmful effects.

I now know that adding things such as essential oils enriches the experience and helps to retrain the brain with the "it's ok" message.

Many physiotherapists can now offer a motor imagery and mirror therapy program.

This blog is about what works for me. I encourage sufferers to refer to their professionals for advice. Dr Lorimer Moseley employed a motor imagery program which was "two weeks each of hourly performance of a hand laterality recognition task, imagined hand movements and then mirror therapy."(notes from 8th International Physiotherapy Congress) Personally I did not follow that regime but just used a mirror as described. It really does work for me just using a mirror, hiding the painful part and watching the mirror image of the non painful part performing a movement that would be painful for the other part. I believe many physiotherapists use Dr Moseley's method which would undoubtedly be the best way to go. I contacted the authors of "Explain Pain" about how it could be applied to whole body or back, essentially body parts that cannot have a mirror image. David Butler, co author, indicated that research has been done on hands and feet at this stage. He did mention that it has been shown to work for pain after single sided mastectomy. Pacing and graded exposure is very well explained in the "Explain Pain" book. G. Lorimer Moseley and David Butler co authored this excellent book. www.noigroup.com will give you information.

Friday, October 13, 2006

Stress makes pain less tolerable.

Global warming is a fact. Yes it is stressing me and hopefully all of you. The way I plan to reduce the stress over this is to take action. Individually we can help by being more aware of the little things we do. Collectively we can be powerful. I just received a newsletter from David Kosh from Sunrise on seven TV in Australia.

We've now had more than 100,000 people sign our online petition against global warming.

Can I just say how thankful we are for that.

It proves there is a real will to make Governments understand how serious the problem is. I know it sounds like we're harping on about it - but I think we need to. We had a report this week from islands on Queensland's Great Barrier Reef that are changing before our eyes. The beaches are disappearing - and the coral is all but bleached. Sea turtles are now dying throughout the Whitsundays.

We've been chatting in the office about how to make COOL THE GLOBE even bigger.

One other event we should tell you about. Walk Against Warming is a National Day of Action on Saturday November 4. There will be marches all over Australia. We'll be taking part in them - and you might want to consider it as well. You can find out more by visiting the official website: www.walkagainstwarming.org. You can also sign their pledge to walk, so they can get an idea on numbers.

I applaud the Sunrise team for taking this action and urge you all to control your stress by taking action. Remember as well that distraction is a great way of dealing with pain. Let taking action absorb your concentration and make this work for all of us!

Thursday, October 12, 2006

Main beach at Byron Bay today after the market.
Click on photo for a better look.

WHAT WORKS FOR ME to ease the pain of Complex Regional Pain Syndrome naturally.

  • mirrors (August archives photos)
  • essential oils (still experimenting but amazed so far)
  • breathing out twice as long as in (August)
  • distraction (September archives)
  • magnesium for muscle spasm (September)
  • fish/fish oil for inflamation
  • beetroot for liver protection and antidepressant
  • isometric exercises to reduce pain (September)
  • epson salts warm bath (September)
  • chili cream (capsaicin)
  • heat pack
  • graduated repetition of movements (September)
  • pacing
  • move it or lose it
  • deflated ball gives a great massage (see photo September)
  • butterball bath bomb
  • water relaxes, calms,slows and improves breathing, helps sleep (September)
  • Caring Doctors (September)
  • Letting go of worries and avoiding stress (October)
  • Acitvely seeking happiness (October)
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.

Wednesday, October 11, 2006

Latest developments involving Complex Regional Pain Syndrome

This information and more can be found on virtualpaincenter.com

Current Management of reflex sympathetic dystrophy syndrome

It's good to know that there is current research on this painful condition.

Monday, October 09, 2006

Neglect symptoms and crps.

Sufferers of crps have this unique symptom of not only having an altered perception of the affected limb but also physically protecting the limb and therefore developing physical problems due to lack of use or altered use. The brain is the problem here as it is telling us clearly by pain that something is wrong when usually nothing is wrong. Other chronic pain sufferers also develop this altered perception of the affected limb. Where crps sufferers differ is in the fact that we can develop the physical stuff. I think we are given the message by professionals too, that we need pain relief in order to do physical therapy when the more urgent need is move and move bilaterally all the time to maintain condition. Where we have to be careful is to do it in small steps and often, instead of overdoing it and "paying for it". We get into a vicious cycle of too much and too little.

Don't worry! Be happy! Important for managing complex regional pain syndrome.

Don't worry! Easier said than done but it's well known that stress makes all pain worse. I've found that I have to make myself let go of things that I would normally worry or be annoyed about. Not the major stuff, just the little day to day things that can get me down or make me cranky. Making a conscious decision not to dwell on things takes an effort especially when I feel justified in being upset or anxious. But feeling this way just makes me stressed and stress ramps up pain so in the end I suffer and the suffering isn't worth it.

Be happy! I make a conscious effort to seek happiness. I watch funny TV, pat my dog, love my husband, laugh with my children on the phone, ride my bike, walk along the beach wading in the water, laugh with a neighbour, share a cuppa. I also choose to look for positives in situations but I think I should avoid the news which tends to focus on gloom and doom. Endorphins are raised when we're happy. Complex Regional Pain Syndrome is a depressing condition and it takes a real effort to focus on the positives in life. I have to avoid beeing sucked down with pain and keep a conscious determination to rise above it. Life is for living. We get one go at it and I don't intend to waste it. The motto of one of the school where I 've taught was "LIVE LIFE TO THE FULL!" I plan to do just that.

Saturday, October 07, 2006

Complex Regional Pain Syndrome - what works for me as drugs aren't an option.

Click on August and September at the left of this page for more info and photos and click on photos for a better look.

Friday, October 06, 2006

To move is not to injure. Not to move is tortuous.

Is there a need to change initial treatment for first diagnosed crps? Is it better to put the main emphasis on explaining that to move is not to injure and that if you avoid movement and touch because it's painful you run the risk of neglect in that area, worsening symptoms? I know that not moving or being in the one position too long is extremely painful. I also know that it is best to move bilaterally or with the whole body and to pace yourself not overstimulate. It took a long time of being on the roller coaster of "I feel better so go go go" followed by long "paying for it" periods. I've developed problems with my left shoulder even thought my injury was to my right wrist. Because my wrist is stiff with limited movement, my right side takes the weight of lifting and carrying etc. I can't avoid this so to create a balance I exercise with both sides equally and use a full range of movements. This determination to keep moving has resulted in my moving normally. I look normal and use no aides. I'm grateful for that.

Wednesday, October 04, 2006

What is complex regional pain syndrome?

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.

Tuesday, October 03, 2006

These Grass Trees are uniquely Australian and are living fossils.
Ancient Antarctic Beech trees.
Border Rangers National Park has spectacular fungi.

Border Ranges National Park is a day trip from Byron Bay.

Did this really stop the spread of crps?

Last Friday I rode to the shop and was attacked by a small dog on the way. In an effort to get the bike between myself and the dog I wacked my knee. It really hurt. I was concerned that I could have problems with the leg because of it. I was shaken but had the presence of mind to think about what I could do to minimise complecations., so I rubbed my knee. Then I distracted myself by singing a happy song on the way home. (a bit like Pooh bear) Well I have a bruise on my knee but no other symptoms. I can't be sure what I did prevented a flare up in that area but I strongly suspect it might have. I usually am not so lucky.

Monday, October 02, 2006

CRPS and tendonitis - something to ponder

I've been diagnosed with
  • shoulder tendonitis (both shoulders at different times) - inflammation in a tendon
  • plantar fasciitis (both feet) - inflammation of tissue
  • bursitis - inflammation in a bursa
  • tennis elbow - inflammation of tissue
  • morton's neuroma - involves inflammation of a nerve
At first glance it appears that I have a great deal of inflammation but I question this.
  • Bursitis pain was "cured" by mirror therapy.(Thanks Nigel. You're a legend.)
  • Morton's Neuroma pain was "cured" by mirror therapy.
  • Tennis elbow pain was "cured" by laser acupuncture.(Thanks Dr Liz. Another legend)
  • Shoulder tendonitis was relieved using mirrors. (continuing therapy)
  • Plantar fasciitis was relieved by orthotics. (Thanks Heather. You know your business.)
My theory is that something happens to irritate a nerve in the area of pain and that the brain translates that irritation as pain. However in sufferers of CRPS, pain is ongoing after an initiating event. Therefore I think that while there is ongoing pain, there is not necessarily an ongoing irritation. I think the acupuncture and mirrors stop the brain's pain message. It appears in my case that although the pain has now gone there are still mechanical issues which are being addressed. That mirror exercises work absolutely amazes me. By looking at the mirror image of my painless leg doing exercises which would be painful for the other leg, my brain gets the "it's ok" message and miraculously the pain stops. I 've also noticed that the leg relaxes and spasms also stop.

So, did I have all those conditions? After talking again with my physiotherapist I now realize that I did and still do but the pain of most is gone. The exercises and other treatment helped the conditions but didn't take the pain away and some of it just ramped up the pain. The problem was the brain wouldn't let go of the message. Mirrors and lazer acupuncture allowed the brain to accept that all was ok.
I was also told I had carpel tunnel syndrome in the area of my original injury. This was not long after my accident. I didn't think I had this so searched the net for information about the suggested operation. I discovered that a nerve conduction test can confirm the diagnosis. I had the test and I did not have carpel tunnel. Knowing what I know now, I suspect that the nerve in that area was irritated, probably from swelling ( as I suspect with all the others) and the pain just persisted.

Something to ponder.

Sunday, October 01, 2006

Have bike, will travel.

Pacing brings rewards.

We are told to pace what we do in order not to aggravate our symptoms and overstimulate. It's too tempting to go like mad when I have a better day only to cause more probems and "pay for it later" as I've heard others say. Well today I rode to a local cafe with my gorgeous husband. We had coffee and shared cake as both a reward for making it there and a break in the journey. We took our time and stopped along the way looking at and smelling plants in people's gardens. My bike was made to suit my needs with soft suspension, a rotational gear shift and a very soft seat. It's just the basic girl's bike model with modifications, and including rear basket was about $250. I just love it. My plan is to ride a little every day. My feet still get stimulated walking so my idea is to walk a little and ride a little. We've just bought a bike carrier so we can now check out other areas.
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