Sunday, 11 September 2011

Introducing my CRPS

I have a condition known as Complex Regional Pain Syndrome (CRPS) also known as RSD, a rare disease which affects the Sympathetic Nervous System. CRPS affects both my lower legs from and including the knee downwards. Actually it's moving above the knees if I'm honest but I prefer not to think about it. I also have problems with my eyes. I will have had CRPS for six years come December. I would not wish this disease on my worst enemy so completely debilitating and life changing it is. The only way to deal with the catastrophic effect it has had is to now consider my life as consisting of two parts. Pre-CRPS and Post-CRPS. More on that another time.

The day to day impact of CRPS is that the affected areas are constantly (and I do mean 24/7) painful. This pain is not a gentle ache, we are talking pain of the potency that at times you would happily accept death just to escape it. That sounds ridiculous to 'normal' people, after all everyone suffers from pain, we should just get a grip and get on with it shouldn't we?

My pain is constant, relentless and varies in type and intensity. I constantly have what feels like ripples of fire running up and down the front of both legs. Most of the time I can't actually perceive my legs at all, there is just pain. Then add in the stabbing pains, such as through the middle of each foot, as if you've been impaled to the floor. Or the side of the knee as if someone has stuck a knife in and is slowly twisting it. Or through each ankle, or through the middle of your leg. Imagine this is happening all day every day, it never goes away, never gets better. Indeed it only gets worse if you do even the most trivial of things. Indeed CRPS punishes you for daring to do somethings as simple as have a bath, get dressed or anything else considered even vaguely normal. Life with CRPS is about as far from normal as it is possible to get.
The swelling - gross!!

Sadly you don't just have to deal with the constant pain, there is so much more. The swelling (oedema) around my knees and ankles is frankly disgusting. Years ago I measured around one of them and it was 34". Yes the same as many men's waists. And both knees are worse now, I don't measure anymore. My right foot points inwards because of the swelling around my ankle. I can't see my toes as they are so turned over. Bizarrely both big toes stick up on the air constantly. I cannot move any of them because of the pain. Unfortunately I still have full range of movement so that should my joints get pushed or pulled accidentally they work, producing exquisite, sickening pain. My balance is unsurprisingly rubbish.

What else? Oh yes the hypersensitivity (allodynia). My legs cannot stand anything touching them, my pain increases the longer the contact. I spend as little time as possible wearing trousers, socks. Perversely even the slightest hint of air flow over them increases the pain so my legs have to be covered constantly. The phrase 'stuck between a rock and a hard place' springs to mind. My husband has to help dress me. He is incredibly careful but sometimes he touches me slightly with a knuckle. This causes me to howl with pain. It is unbelievable how the slightest of touches exacerbates the pain so much. Similarly hot/cold water causes a disproportionate response. My husband runs the bath, so I know the temperature is fine. Yet I put my foot slightly in, it feels boiling hot. Movement of water, has the same effect so swimming is impossible. I even pick up the vibrations from the car when we go out. This forces my husband to try and find that particular day's optimal speed in an attempt to minimise the pain.

Speaking of increased pain, when my legs are 'down', say as you would sitting normally on a chair, then my pain increases as does the purpling effect which is ever-present over the whole of my lower legs. I can no longer sleep in bed, so my life is restricted to living & sleeping in an electric reclining chair, with my legs up carefully covered with a lightweight duvet. When I go out my wheelchair also has to have elevating leg rests.

Like so much with CRPS you have to tell yourself that there is NOTHING PHYSICALLY WRONG with your legs, you cannot damage them and the water isn't too hot. Really difficult at timesI can tell you...

The above sounds horrible as I read it back. However it is not exaggerated in any way, I'm just telling it like it is. I remain as positive and bloody-minded as I was pre-CRPS, two qualities that have helped me deal with it. I rattle with pills that do very little and I am constantly 'punished' for daring to push the disease as hard as I can.

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