Spreading like wild fire...

I seem to remember that bush fires 'jump' from one side of a road to the other and carry on destroying everything in their path...I think I am discovering that crps is just like that (jumps from one limb to the other).

Lets just say I think I am experiencing a mirror type spread. My once fondly called good Left foot seems to have decided it felt left out and is joining in on the game of crps.
Burning hot pain, allodynia, exact mirroring of the red patches on my feet, and up both legs the bright red stops at exactly the same height, I swear its just like looking in a mirror-even my Mum was impressed (and then asked me whether this was good or bad...). I've also been experiencing my share of pain related nausea, so much so that I have not been able to control it (puking is ghastly, I hate the whole feeling especially when you don't feel relief after).

I say that I'm not happy about this but in reality I'm emotionless, I think I automatically shut off all feeling before I had a chance to think-protection mechanism perhaps?
Anyway, there is no point in being angry or upset or stress about it-that doesn't achieve anything.

It might just be some kind of flare...I might have unsettled things in my latest fall, maybe its because of all the stress I've been subject to recently...I could make up reasons till the cows come home-and that's what I plan on doing for now. Its really too early to say (I'm telling myself, well its only been a couple of weeks or so, not long enough to have any idea). I'm sure things will settle down soon and Lefty will decide it doesn't like copying Righty after all and go back to being normal...I'm sure that's the case...

...but lets just say, umm, well I don't quite like it and am trying very hard not to think about the possibilities.

But just now I am pretty gutted that I can't see either my pain specialist or my crps physio, neither of them are seeing patients my ONE week back home for uni break.

Untrue

I shed a tear for you, a river flowed.
You never saw the care I showed?

I wouldn't hurt you, why cant you see,
You were so very dear to me.

I opened up, I showed to you,
Behind the mask, real me to view.

I feel confused, I cannot say
why have I this price to pay?

What changed? What made you turn?
I have so very much to learn...

The things you said, they hurt me so
My heart you shattered with one blow.

I wish my grief would go away
You are not worth the time of day

I have wounds, they will not heal
Life is cruel, I know the deal.

I cried for you, I shed a tear,
This just shows real friends are rare.

Crazy fun here I come....

I am about to go off to the first day of a 3 day jam packed dance workshop weekend!

Today its 9am-5pm (with a less than hour break for lunch) of dance workshops, information says a sampling of European dances especially from Russia in the morning and then Bulgarian dances in the afternoon. I am both excited and nervous...I have prepared as best I can, meds, lignocaine, TENS, more meds, good shoes, snacks and I have promised myself that I wont try and pretend I am fine...if I need to sit out and just watch so be it, I will listen to my body.

We also have a party tonight (as well as tomorrows workshops, a gala dinner and then another party and then revision on Sunday morning...does that just make your head spin like mine does?), whether I actually end up going tonight is another matter, I am just staying cool, calm and collected and if I don't well thats ok as I want to be going tomorrow to the big dinner and dance party.

I am slightly nervous but people keep telling me to be positive and I'll be fine...how come being positive automatically means you will be fine? I can be positive all I like and still not get through simple tasks some days, just shows they dont understand really what this is like for me. BUT I am positive all the same, positive that I will enjoy myself to the max and have loads of fun, but I'm also positive that I wont push myself too hard to the point where I am prone to have an accident...that is the last thing I need lol!

I am prepared as much as I can be, so now I just relax and enjoy myself! Take care.

Its just too hot

We are having a proper summer just now with temps up in the 30s Celsius. I am the first to say I don't like the cold but my previous tolerance for the heat seems to have disappeared too.

My bedroom is upstairs, and faces a direction that means thus far I have failed to keep it cooler in any way, in fact it seems to be the hottest room in the house :(
Not very helpful when it comes to resting up or trying to sleep, even at night as it doesn't cool down much either.

It is just too hot for me, my foot feels like it is so swollen that my skin could explode (it doesn't look swollen though so that is ok) and doesn't help the burning pain. I'm cranky from pain and lack of sleep and just wish I could stop hurting for just a little bit, I'm tired of all this...I'm hoping that this weather doesn't last too much longer as a few cool days would be appreciated-not just by me but I think a few people!

It keeps getting better...

So today somehow things kept getting worse, for some reason I am not coping with the pain at all and it frustrates me that I am not able to cope when I think I should be able to. I have tried so many things this week, deep breathing, thinking of other things, moving, nothing seems to work and I'm not sleeping which doesn't help either.

After one of my numerous falls this week I have stuffed the lead of my TENS machine and it stops working as soon as I put it in my pocket. This has had a huge impact on my pain coping strategies and not helping at all. Why does life have to be so hard? Is it not hard enough already?

I ended up in tears (yet again-I lost count today) in one of my lab tutors offices. She was lovely, TENS are her thing and she knew just what to do, rang a place to help me order a new lead (will take 2-3 days to arrive) and set me up with a temporary one that is not as good as mine but hopefully will be better than nothing.

I went to lab after having calmed down a bit but I had such a headache and couldnt focus on the complexities of the shoulder joint, hopefully tomorrow I will be able to concentrate better.
One of my friends kept accidentally kicking my foot under the table and every time she did I jumped and cried out in pain, it just wasn't my day!

All I can hope for is that I sleep tonight and am able to get through my clinical placement in the morning, I am dreading it as I have to disclose my "risk of falling" and I really dont feel very comfortable with how to do it without making it a big deal. Why does life have to be so complicated?

Pain please go away...

I can't think, its way past my bedtime and I should have completed the written notes for a presentation I am helping give tomorrow...

My head is shouting pain pain PAIN and I need it to be unraveling the complexities of MS...

What on earth did I do to create this flare? and all I can think is-what will I do tomorrow if I'm still like this and I am supposed to be presenting my part of the talk? how can I stand up in front of my class and not cry because it hurts that much...

But I'm forever looking on the bright side...one more day till mid-semester break! and one day more till I get to play dress up and photo shoot with my god daughter and her family before I head home to my own family!

The consequences of fear avoidance

I am beginning to learn the implications of 'misguided' information and the strong negative effect it can have on some patients. In the last few weeks I have met several patients who have made chronic pain the focus of their existence, I believe fear avoidance plays a big part of this.

One was told erroneous information about an incidental x-ray finding. As a result, very shortly after, his life completely fell apart, due to chronic pain and (I believe, based on information he presented) fear avoidance.

Here is an excerpt from my current reading:

Fear is a powerful motivator. It contributes to how you move, behave, and experience pain. The sources of fear are diverse. Fear may be strongly dependent on context, be obvious or be hidden.

All sorts of fears can lead you into a cycle of pain and disability from which it can be difficult to break free. Some of the information that you receive from health professionals, friends, and the media may contribute to fear. Different fears will be relevant to different people in pain at different times.

However, all of them can be considered under the same banner that we have mentioned repeatedly: your livelihood as a human is under threat. Remember, in persistent pain, when the alarm system and brain are sensitised, all of these fears can help maintain the pain by activating those pain ignition nodes - and set the orchestra up to play the pain tune. Remember that the brain wants to protect you from anything that is dangerous.

To face these fears, you need to be informed and understand as much as possible about your body. And you will need to be brave - this is the vehicle for the road to recovery.

Butler, D., Moseley, L. (2007) Explain Pain Third reprint, p. 100, Adelaide, South Australia, Noigroup Publications

After 6 years and a lot of suffering, he is now under pain clinic care and hopefully in time, this multi-modal intervention will have a positive result on his life. It is going to be a very slow process and require a lot of effort to restore the identity he was robbed of.

Initially I was alarmed by how much had been placed on the words of one health professional and how much now has to be done to undo those ingrained thoughts to get him back to functioning to the best of his ability. I wonder how differently his life would have been had he been informed, firstly with more accurate information and in a way he would understood. People place too much on a diagnosis, too much on structures and phrases and create mental pictures that feed the fear avoidance rather than create active coping strategies.

I could see mirroring of my own situation in what they were telling us (all chronic pain has many similarities) and I hope that because I have been exposed to some knowledge I will not fall into the mindset that some people get stuck in (through not fault of their own, can you imagine dealing with so much pain you don't know what to do and just being given a diagnosis and no useful information on how to cope with it?).

I just need to remind myself not to get too hooked up on the label but to focus more on education, staying positive, setting then reaching goals and exploring the edges of pain to remind myself that in my case, a little pain is not the threat my brain thinks it is.

And never giving up hope, life is still incredibly good!

With this amazing gift I will put all I have into keeping my identity and showing that pain is not my life, just a tiny element and I'm strong enough to step up to the challenge it has created!

Explain Pain

I'm reading a book at the moment called 'Explain Pain' by David Butler and Dr Lorimer Moseley, its easy reading and explains pain very well. Just so happens, we had a lecture on the mechanisms of pain the other day and much of the content was taken from this book! In the near future I'm hoping to contact Dr Moseley as I have been told he is actively researching CRPS and mirror therapy at Oxford University, I think it would be really neat to hear from him anything that might be interesting or useful in my quest for more knowledge.
I really like their book and am thinking of buying it at some point. It would be a great addition to my growing collection of resources and also an asset for my future patients.
It was interesting to hear our lecturer said that we really should be spending a lot more time studying pain and also more psychology too as we are dealing with people, usually in pain all day. This is who physio's deal with so we should have more understanding of pain and how it affects people in a more biopsychosocial dimension.

Leads me to the next thing...I've just started seeing a psychologist.

It took me a bit to actually admit that this might be helpful and then to admit I was going lol. But the more I read, the more I understand how chronic pain affects more than just the physical side of us but also affects the psychological side. I'm hoping that it helps some, even now its nice just to have someone to talk to, someone you don't feel guilty burdening with all the crazy stuff that is spinning round in your head. We haven't got very far as yet because I am a complicated person but he thinks that my emotions are causing a lot of strain on me physically so I guess we see where this takes us. If it has the potential to help, I'm willing to give it a try.

Physio is Fun!

I just love hydrotherapy!
Three Thursday afternoons in a row I get to 'play' physio with 5 of my classmates (under the watchful eye of a registered physio of course) in the hydrotherapy pool. This is probably the best placement I am going to get really.

The physio pool is 37 degrees Celsius, deliciously warm and my hurting body appreciates it immensely. I feel so much more alive and physically able in the warm water, pain settles and movement becomes easier.

Our clinical tutor was explaining to us the importance of movement after injury or surgery and then she said otherwise RSD can result...how amazed was I! I hardly ever come across people who know about it, I said that I had RSD and I think she was amazed too! This week I'm going to ask her if she has treated any patients with RSD before and how much she knows about it in general.

I think I am going to do a lot better in this placement-I feel more confident and it helps to be in a pain relieving environment. We had health and safety stuff and one patient last week and this week we hope to have 3 patients. Tutor said that if one doesn't show up they can use me instead as I'm injured lol!

Only problem is that after 2 1/2 hours you are very wrinkly and regardless of the warmth my foot didn't appreciate being used that long despite most of the time it was less that 50% weight bearing. I still love it though, I even had a chance to do some of the stuff prescribed to me by my own physio.

This was a bad mistake

I was going to head this up with "Just shoot me now" but then thought that was a bit severe and since I brought this on myself I have no-one else to blame.

I must not forget to plug in my battery charger
I must not forget to plug in my battery charger
I must not forget to plug in my battery charger
I must not forget to plug in my battery charger
I must not forget to plug in my battery charger
I must not forget to plug in my battery charger...

I forgot...

...and had no battery for my TENS unit today and boy did I learn a lesson.

2 days ago, I was going (carefully) down the stairs after our lectures. The stairs are a dark red colour and the stairwells are dimly lit. I happened to think that I had come to the landing when in fact their was still another stair to go. Luckily I was holding on to the rail and had a friend on the other side just ahead of me to catch me when I fell.

The bad news is I still fell, just didn't fall over but I jarred my foot-I consider rather badly.

Apart from me shaking so badly from the shock, my poor foot is not happy. I haven't been able to walk properly the last few days and after todays mammoth efforts in the walking department I have broken down. The shower water was unbearable, my sock is unbearable, I couldn't concentrate in my anatomy lab and its too cold and so I have to put something on it to try and keep it warm. Moving is now unbearable but keeping still is just as bad.

I have been beaten by pain and I have cried.

Now I have told myself off, tears are futile, they do not take away pain, nor are they beneficial in any other matter-what a pity.

I must be more careful and not fall down stairs
I must be more careful and not fall down stairs
I must be more careful and not fall down stairs
I must be more careful and not fall down stairs
I must be more careful and not fall down stairs
I must be more careful and not fall down stairs...