I have Reflex Sympathetic Dystrophy Syndrome also recently known as Chronic Regional Pain Syndrome (RSD/CRPS – inventive I know!) November is the international month of RSD/CRPS awareness.
All over my Facebook and Twitter feeds are wall posts and hash tags emblazoned with the bright orange ribbon - our united symbol. There are quite a few variations of the statement ribbon but you get the general gist – orange symbolises the pain and specifically the burning sensation we all deal with.
If you have a couple of moments please watch this video:
It’s been not so subtly mentioned that I should write a piece on my personal story the campaign – uniting with my fellow RSDer’s. So here I am!
I have had the condition for close to 20 years now, all starting when my left foot suddenly went completely numb, as I have mild Cerebral Palsy, at first it was thought that my odd symptom was a nerve damage and I was later tested for tumours on my brain and spine – nothing was found.
At the time of my mysterious foot numbing the colour in my leg started to turn a dark purple which would fashion it’s self with red spots and blotches after being in water. To be honest being such a young child I didn’t really worry about the foots lack of enthusiasm and in case of further damage I was banned from P.E lessons – brilliant!!
Sadly the numb foot became a raging ball of fire which left me screaming with agony – it felt as though someone had lit my foot on fire and that the muscles and tendons where trying to rip themselves in half.
Since that horrible day my life changed; I’ve always since felt let down by my own body. The long list of symptoms include pain in every possible way – burning, pins and needles, a sensation as though I had hot rods coming out of the leg, spasms so bad they’ve deformed my foot into a crescent shape with my toes and crossed over and distorted into yucky little features. This is not to mention the permanent circulation problems, hair loss, swelling of the limb, tremors and many more!
That’s the horrible thing about RSD/CRPS – you never know how you’re going to feel when you wake up. Yesterday evening I was up until 4:30am in pain, close to fainting and on the verge of being sick, when I woke this morning, I just had a horrible dull ache and pins and needles and tomorrow I might wake up with my foot contorted into odd shapes due to severe spasms and cramps. Not knowing how I’ll feel tomorrow, next week or next year is the only thing that scares me but I’m always optimistic that one day it will go as quickly as it came.
For now I’m really suffering as the condition has moved to my right leg and left arm. It had never occurred to me that I would have a certain amount of pain muted in the left leg due to my Cerebral Palsy (as very simple way of explaining CP is a stroke at birth) and the limited feeling I’ve always had in my left side might have saved me from a lot of discomfort. But now the right leg could/is causing real trouble! Still – I’ll live!
It would be a great help if you could share this piece on your Facebook walls, Twitter feeds and Blogs, there still people who don’t believe the condition including medical professionals – despite the very physical signs and we need the support!
L x
(Twitter name Ladygogo84)
Blimey lady that sounds like such a lot to deal with every day. I hope you have found treatments which help you. Best wishes. xx
ReplyDeleteHello, i to have CRPS/RSD and know what its like to be in pain day in day out 365 days a year. Its the worst pain i've ever felt in my whole life and i find it hard that people i talk to agree with me like they understand but they really dont and i know they are only just trying to make me feel better but its hard to put on a smile. I am in a wheelchair when i go out and im constantly on crutches and when i go out people just gorp at me like im some sort of monster.
ReplyDeleteThank you for trying to spread awereness :)
Take care Emily x x
Anybody who knows you, also knows that you never complain about what is happening and always try to laugh if off, making the best of any situation. You are a lesson to us all. I love the way you are matter of fact about your problems, not wanting sympathy, just understanding.
ReplyDeleteLove you loads
Elaine xxxx
We are aware. We are proud. We are in awe. We respect. We listen. We assist. We do what we can when you want us to. We are your friends and family. You know where we are...
ReplyDeleteImagine living in a body that causes you pain 24/7 - that's CRPS. There's no getting away from it at the present time but sufferers should not let hopelessness into their lives. A growing community of people and doctors are doing their best to help and come up with a cure. Don't lose hope!
ReplyDelete