Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 07-05-2013, 01:33 AM #1
momofrsd momofrsd is offline
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momofrsd momofrsd is offline
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Quote:
Originally Posted by katiek View Post
Hi. I was wondering how people explain crps to others. I moved to australia 4 years ago and am due to go home to the uk for a wedding next year. My concern is that when i left my crps was very mild and most people didnt know i had anything out of the ordinary wrong with me. After a flare up a few years ago the crps has spread. I walk with a very noticeable limp and sometimes use a cane. I have limited use of the effected arm. But my main concern is the permenant tremours and speech problems. I should be feeling excited about seeing my family and friends but i am dreading it. Does anyone have any advice
I have had to help my 14 year old with this issue and explaining it to her friends and teachers at school. Basically your pain centers in your brain do not know how to shut off. They do not understand that you do not have a visible "injury" but your brain is telling your nerves that you do, therefore it affects your ability to control the muscles in your body (walking, talking, using your arm) since all muscles are controlled by nerves. Your brain and nerves continue to think you have an injury and way down at the cellular level they are working as if you do, releasing chemicals that cause pain, and also not allowing your pain pathways to shut off.
I hope this helps. I know it has for my daughter, and it has helped others understand how complex our brain really is! GOOD LUCK.
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Old 07-05-2013, 07:05 AM #2
KathyUK KathyUK is offline
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When I have to explain I say I have a neurological disorder and give the name of it. I keep it short and tell them it causes pain and effects my mobility. To be honest though other than because of the lack of awareness, I don't see why someone 'different' should feel they have to explain. People are nosy and think it ok to ask what's 'wrong' with people like us, but they wouldn't dream of intruding on other people's personal business. I don't personally like the great big long "Understand me" type posts that you see for many chronic illnesses. To me they seem almost combative and selfpitying. That's not to say others shouldn't use them, I just personally switch off to that kind of thing and if I do I can't expect others not to. I keep it short, simple, polite and not woe is me as I don't like a fuss or for other's to think I'm after pity. I'd like more people to know about CRPS but at the same time I'd like to think that by keeping it fairly open/positive they might go off and look it up.
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Brambledog (07-05-2013), Djhasty (07-05-2013)
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