NeuroTalk Support Groups - How do you explain CRPS to your friends?

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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 to your friends? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/87637-explain-crps-friends.html)

Where is your paper linked on here Andrea ? I'd love to see it too

I attempt to explain it in as few sentences as possible:

WC injuries that led to 2 knee surgeries to same knee, and complications that led to RSD/CRPS I. Sympathetically Mediated Pain Syndrome/Chronic Pain.

Objectively, my knee is healed;however, my pain receptors have reversed and are stuck in hyper pain over-drive; a neurological disease. Too much time had passed before diagnosis was made to reverse the condition. There is no cure, to date.

I try not to talk about my illness at all. Most people who meet me do not know that I have anything wrong with me. (it's easier for me to hide it than for so many others because I can still walk well most of the time). If people ask about my shoulder, since many of my co-workers, neighbors and family know I had 2 shoulder surgeries, I just tell them its coming along. When really pressed for information, I usually reply that "my sympathetic nervous system burped along the way when I was healing" and ask whoever I am talking to about themself. Most people would much rather talk about themselves, anyway.

When I really want to talk to people about RSD, I come here.

Sandy

Quote:

Originally Posted by finz (Post 514596)

Where is your paper linked on here Andrea ? I'd love to see it too

i just bumped it up.

How do I explain this to friends?

What are Friends?

Hey, If you've got friends, after having RSD for a while, YOU are one of the luckiest people ALIVE!

Pete
Asb

Quote:

Originally Posted by SandyRI (Post 515167)

i'm the same way... although kinda hard to not talk about it since for the last year and a half its been tattooed on my forearm in bright colors lol

Quote:

Originally Posted by rogerc (Post 513886)

Howdy,

MY intro...
I am a 56 year old male with MS and now with CRPS.
New to this site, broke my ankle last Sept and after about 4 months was dx with CRPS. Damn it hurts, thought I had it under control at first. Was taking predisone and it appeared to help then all of a sudden it didn't. I wanted a second opinion to make sure it was not from all the hardware in my leg and the orthopedic surgeon looked at my foot and makes it clear that I had CRPS and that I need to see a pain specialist right away. Waiting to get to the appt in about 3 weeks but in A LOT of pain now and taking Lyrical. Will probably start on oxycontin in a few days to help.

Does this match up with the medications and what the rest of you have gone through?

I am also trying to figure out how to explain this disease in a short easy to understand explanation to my friends and co workers. How do the rest of you explain this?
Roger

Roger,

There is also a pretty good paper, in addition to Andrea's very excellent work, at:

http://www.discmdgroup.com/pdf/carde..._physician.pdf

Dubious..wonderful link:

http://www.discmdgroup.com/pdf/carde..._physician.pdf

Thanks for sharing:)

Quote:

Originally Posted by AintSoBad (Post 515406)

How do I explain this to friends?

What are Friends?

Hey, If you've got friends, after having RSD for a while, YOU are one of the luckiest people ALIVE!

Pete
Asb

I love to reply to myself!

Anyway,
I've got some of the most wonderful friends in the world.

You know what?
They are all "Wonderfully Damaged" too, just like me.
WE forgive and forget that about each other....

It's the "Perfect Ones" you've got to be careful of...
They'll let you down!

Anyway,
I tell them:
It feels like my bone marrow is on fire, yet my skin is in a blast freezer.
And, every nerve in my body says "Pain".

Nothing YOU've EVER FELT BEFORE, it's DIFFERENT than anything I've ever felt before.

Keep it short, and to the point.
Then, smile, say "Hey, I'm Alive", and walk away.......

p