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CRPS/RSD information

What is CRPS/RSD?!

It is Complex Regional Pain Syndrome and is also known as Reflex Sympathetic Dystrophy.It is a chronic pain condition that usually starts in a limb after an innocuous injury causing pain beyond what is expected. It can spread along the limb, mirror to another limb or spread whole body; including internal organs and eyes/face.
There is no known cure but through this blog I hope to share more on what it is.

When flares get you down… or another week living with CRPS

CRPS and my life Posted on Feb 09, 2014 22:29

I went away last weekend for some respite and recovery with Help for Heroes. It was absolutely fabulous!

However I then popped into an event in London on my way home where the pain really started. In my speed to help one of my friends I didn’t think what effect it may have on my own health.

So when I ended up in A&E getting assistance for the increased pain I hoped that one day and it would all be over again. However that was not to happen; after a week of varying pain levels and feet that could rival that of an elephants hoof I decided to take myself to Wales. I had spent far too long in my own head and needed some time to get myself together and talk it out with people who know me.

This I managed but I am now struggling to work out how to deal with the increase in pain longer term and how to integrate the decisions I’ve made back into my life.

Pain will never finish me but it makes me re-evaluate everything in my life and realise that life never stops. Even when the pain tries to make me!

CRPS from my perspective before it spread to my other leg!

CRPS and my life Posted on Sep 06, 2013 19:35

It means that my right foot predominantly hurts constantly and by hurts it ranges from; touch sensitive or mildly tingly (like pins and needles but milder) through every type of pain and feeling to feeling like someone has put it in a vat of hot oil, set fire to both the oil and my skin, then sunk red and white hot pokers through the inside of my leg and foot.

When I’m quiet it means I’m close to fainting, being sick or collapsing because the pain’s peaked so high and I can’t cope even though I’m used to what it can get like now.

My foot swells and swells and swells just because although when it starts swelling my pain is also increasing ten fold. So when my foot is swollen like a balloon I will also be in excruciating agony. If you ever see me like this and I haven’t sat down or I’ not resting. It’s not because I don’t want to be it’s usually because once my foot has got this bad the pain has spread up my leg and will be at least affecting my knee and lower thigh if not my lower back and hip area.

It also changes colour. It can be: purple, red, bruised, with orange spots, with purple marks or just randomly mottled. The colour has no effect on what pain levels I have. Sometimes it changes colour but the pain doesn’t sometimes the pain will escalate but the foot will look normal.

The worrying concern for me at this moment is that when my nerves are flaring (ie. pain is becoming more intense or touch sensitivity has increased) my bladder/pelvic floor has a mind of it’s own. Since attempting yoga and consciously telling myself to use my pelvic floor more and be aware of keeping it tight it has not improved – I have an excellent pelvic floor but my bladder still won’t be controlled. I think it’s related to the nerve disorder as if I hold it in it hurts too but that is a bag I do not want to face at the moment so I’m brushing over it and dealing with it and hoping it sorts itself out in time.

If I am ever seen to be crying, screaming or breaking whatever is under my hands/teeth at any time it means my pain’s become uncontrollable and my meds aren’t helping. Pain makes me silent it’s the exasperation of not coping that makes me show I’m in pain.

If I walk anywhere or put weight through my foot, even just having shoes/socks on, makes it hurt. The heat is like a death wish to low pain levels. Ice makes me flare so badly I’ll be done for GBH before willingly allow anyone to put it on my foot. EVERYTHING hurts it and I mean everything.

I have tried every treatment available at this current time (one plus/neg to military healthcare) and the only thing helps at all is partial use through crutches and more recently my wheelchair because I am flaring so badly these days.

The other big thing is that I may look perfectly happy, healthy and as if I’m not in any pain but I always will be. It’s a sign of my own strength when people don’t realise this. I will also never willingly admit I need help or I’m not coping. I have never been a weak person and I refuse to let the CRPS start me off by making me weak now.