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 01-27-2014, 05:06 AM #10
Brambledog Brambledog is offline
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Join Date: Jul 2012
Location: England
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Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
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Hi Ozzieace

Good question lol, to which there is no easy answer...

I say that I have a rare nerve disease called CRPS which causes me constant pain and makes my body very sensitive to things like cold, touch and wind. All those things cause me more pain. There is no cure yet and painkillers do not take the pain away, even opiates. The pain gives me headaches and affects my concentration sometimes, and can make me very down, but I work hard to appear normal.

I've found that words like 'rare' and 'disease' tend to have a little more effect on people, and even if they don't understand, they listen more to the end part. Obviously it varies but I generally get this much info out. I then stop and don't say any more about it. If they ask more questions I'll happily answer them, but I don't volunteer too much - eyes can glaze over and you end up a social pariah!!! Some people just aren't interested in any illness that can't be cured by surgery or Nurofen lol, and you're fighting the tide there.

I'm always interested to hear how other people explain it - my version has changed several times over the two and a half years I've had it!

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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