NeuroTalk Support Groups - How do you explain crps?

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - How do you explain crps? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/200066-explain-crps.html)

Quote:

Originally Posted by Brambledog (Post 1046572)

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 :winky: 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.

So very well said as usual!! Especially the "eyes glaze over" and "social pariah" part. I would never wish this disease on anyone, but wow, it has
made me wish I had been more empathetic to those I knew years ago who suffered with chronic illness. The same person is still in there!

Well said, Bram. I usually tell people that fibromyalgia is to the nerves in the muscles as crps is to ALL the nerves in the body....skin, bone, muscle, tissue, etc. They are all hypersensitive and make minor injuries feel like major ones. It is not curable, but something we have to deal with day in and day out on our own, mostly. It is a neurological nerve condition that causes pain and inflammation throughout the bodyl. I usually have to say after that, "No, it is not all in my head even though it is a brain problem." Haha! I have found that alot of people act unsympathetic because they don't know what to say. If I set them at ease with some humor, they relax and listen more. Hope you are all having a blessed day and reasonably pain free. :hug:

Suz ;)