Posts Tagged ‘Complex Regional Pain Syndrome’

It can’t be that bad!

Saturday, November 21st, 2009

Something that I have noticed time and time again, is that people associate initial injury with outcome and prognosis. Of course this is completely normal and usually makes sense. It’s often that a minor injury will have a short healing time and won’t cause lasting problems and a severe injury would have a longer healing time and is more likely to cause longer lasting problems. I think that’s where a major issue lies with people understanding how RSD affects those who suffer. It defies logic that a minor injury or sometimes no injury at all, could cause something so horrific – and it is often a minor injury that causes RSD/CRPS.

People are often astounded that I’m disabled from a minor fall. It’s so much easier to anticipate a big accident, involving paramedics, a hospital stay and months upon months of rehabilitation would be the cause of me now being disabled. It’s often been said to me by even medical professionals “pain is subjective, directly to the injury, therefore since it started with a minor injury, it can’t be that bad!”

RSD/CRPS doesn’t play by the normal rules, like other medical conditions. The pain is far from subjective to the original injury. The original injury heals, but the body doesn’t accept this, the nerves misfire and stop working. It’s no longer the original injury, it’s something so much different and incredibly more complex.

Are we in a no win situation? Many people can’t understand something so minor causing something so traumatic, having such a huge impact on a persons life. It simply goes against logic. The sad thing is, those people can step away, it only affects their lives for a limited time – the time that we’re with them mostly. It doesn’t matter that they don’t understand our pain and that they can’t get their heads around the fact something minor had such a devastating effect, because they can walk away from it. As sufferers of RSD/CRPS, we don’t have the luxury, we have to live with it and somehow accept that for some reason, our bodies malfunctioned and didn’t heal normally, but created other problems instead.

Invisibility, but not like Harry Potter!

Sunday, August 23rd, 2009

Have you ever wondered what it would be like to have the power of invisibility? You could go around about your business unnoticed, you could avoid awkward situations where you’re head on with a person and both side-stepping so that you don’t walk into each other and you could sneak backstage to see your favourite band! It could be so cool being like Harry Potter with his invisibility cloak!

I’ve found a much less magical way to become invisible, all you have to do is sit in a wheelchair and instantly people can’t see you! How do I know this? Well, people seem to ignore me and even walk into me when I use my wheelchair.

I may be in a supermarket and people will repeatedly try to walk through me and ignore the fact that I’m there completely. The shop assistant will ask the person that I’m with for payment and even when I give the payment, they’ll hand the change to the person that I’m with.

A change of scenario perhaps? My partner and I took our niece out for the day. Whilst we where out we went to a restaurant, my niece is very obviously a child and could not possibly be mistaken for an adult. As my partner went to the ATM, I went to the restaurant nearby with our niece. “Table for two?” the waitress asks, however the question is not directed to myself, the only adult present, but the child! So although not quite invisible in that scenario, certainly not good enough to talk to!

What is it about a wheelchair that makes you a lower class citizen? In many places you’re either invisible, or just simply not good enough to talk to. Can’t people comprehend that just because limbs don’t work the mind functions quite fine and in some cases superbly? Look no further than Stephen Hawkins, scientific genius but an uncooperative body.

Nattelie from FightingRSD

Fitness and RSD

Sunday, August 2nd, 2009

Research shows that to maintain a healthy body, joints etc. you must weight-bear, flex your joints and do a small amount of impact exercise.

So where does this all leave those suffering with a condition which is said, by many scientists and doctors, to be one of the most painful conditions known to man?

Simply put the question is; will exercise help you deal with your chronic pain more?

In my opinion the answer is yes.  It has been shown in many pain management courses that the fitter you are the more you cope with the agony of CRPS.  That of course doesn’t entirely make the pain better but you do produce more endorphins and thus the pain seems less.

I feel I stand as a testament to this philosophy.  I have been suffering with CRPS since 1973; I was a young child and thus not believed.  The thing is because I wasn’t believed for the most part I just got on with it.  I also come from a family which tends towards being very active, I had to keep up.  Actually for the most part I surpassed those I competed with.  I took up gymnastics, swimming, running and hockey as a youth and later various martial arts.  Not bad for a patient who’s CRPS is spreading.

Then in 2002, following a small accident, my CRPS went ballistic on me and I became increasingly disabled.  My activity level went through the floor and I seemed incapable of getting out of the hole being slowly dug by the pain and huge amounts of medications I was stuffing down my throat.

Then in 2008 came what I feel was the turning point of dealing with this illness.  I underwent a pain management and neurostimulation course at St. Thomas’ hospital in London.  The course was designed for those who were felt to be candidates for neurostimulation, and to give that patient an informed choice.  Even then there are no guarantees that this will help and there are a lot of foreseeable problems with having the unit fitted.  So in addition to the module they give pain management strategies.

Unlike a lot of other hospitals who argue that due to the high risk of infection they don’t advocate trial units, St. Thomas’ do exactly that – fit a trial unit for a period of one week to see what, if any, relief the patient will get.  For me the trial failed.  Though not unexpected it did leave me down for a while until I started getting a handle on the pain management strategies and life without medication, which also did not work for me.

So I am now getting on with life without medical intervention and one thing I have made a choice about is exercise.  I am determined to get fit again.  The weight, due to medication and inactivity has piled on and now it is time to get rid of it.  I am not yet confident enough to rejoin a gym, swimming pools are a no go zone as the cold water makes me spasm and martial arts are probably not for me right now.  So I am continuing with the exercises given to me during the pain management sessions and, in addition, I have taken up yoga.  I have so far lost over a stone in weight and I am feeling more in control of my problems than I have ever felt in the last 6 years since my CRPS went ballistic on me.  I am less stressed and have far more energy than I have had during my battle.

Is the pain down?  No, I can honestly say it isn’t.  Are the associated symptoms reduced?  Again, I can emphatically answer no to this.  So why do I feel better?  Not easy to answer except that I feel more in control, my head is clearer and not so fogged up with drugs and I am truly sleeping better.

Is this all due to exercise?  Well other than being off the pills, yes, I believe it is.

Now I am not saying we should all be training for the London Marathon here but I am advocating being as active as you possibly can be.  I also don’t believe that all patients can drop their mobility aids off at the local A&E unit and start doing the fandango around Tescos.  I do appreciate as well that I do have a fair head start on many, as I was extremely fit before my CRPS went ballistic, though I am no where near as fit now.  I also know that I won’t achieve the levels of fitness I enjoyed previously, my age if nothing else is against me.  I do however feel by getting my weight down I am putting less stress on my body and by being more active I am producing more of the painkilling endorphins which in turn makes me less aware of my pain.  I have also noticed my concentration is better and my depression has lessened.

You can’t cure CRPS but what you can do is control it.  The trick is finding out what works for you and to be as active as possible.  It isn’t easy, I know that better than most but you can be in control and your overall fitness will play a major part in this.

Sian – FightingRSD

Hello world!

Monday, July 20th, 2009

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We’ve been saying for long enough now that we were going to incoperate a blog to the FightingRSD site, so here it is – finally!

This blog is contributed to by several people affected by RSD/CRPS. The author maintains the copyrite of his or her contribution.

If you suffer from or are affected by RSD/CRPS and would like to participate in this blog, please email us at nattelie@fightingrsd.com or sian@fightingrsd.com and please feel free to join the support forum.