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.