[cheryl1593]

Hello everyone,
I am not new to neurotalk, I posted over at TOS site. Had cervica ribs removed 10years ago. Is this the site for CRPS? I am not sure where that is. I see many here have RSD. I just got diagnosed with CRPS after suffering for 10 years with horrible pain. I finally am getting treatment and am feeling better now. Am just looking around for where CRPS patients are......thanks for help!

[pooh_ac]

Originally Posted by cheryl1593

Hello everyone,
I am not new to neurotalk, I posted over at TOS site. Had cervica ribs removed 10years ago. Is this the site for CRPS? I am not sure where that is. I see many here have RSD. I just got diagnosed with CRPS after suffering for 10 years with horrible pain. I finally am getting treatment and am feeling better now. Am just looking around for where CRPS patients are......thanks for help!

Welcome to "our" world! I have had this big nasty thing 1998, I have gone through the "You have RSD" " No they have changed the name to CRPS" Then CRPS 1, AND CRPS 2. SSDD (same ***** different day) I expect them to revert to RSD again any day! It is much easier to just do the RSD ( my insurance company questions CRPS but not RSD)

Z

Best Name for it is FIIKS
F'ed if I know syndrome

[finz]

lol Kev !

Hi Cheryl,

Welcome to NT !
Glad you found us, but sorry that you had to

6 of 1, half dozen of the other.
CRPS is just the newest name for RSD. I tend to call it RSD, because that's the name I first heard this condition called. Many here call it CRPS because that's what they are more comfortable with. A few get more specific and refer to CRPS I or CRPS II. Whatever works for you !

What kind of treatment are you receiving that you are finally getting some relief ?

[tkayewade]

Welcome!

Sorry you have to be here.

Kevscar, dig the name. I say RSD. No one here knows what crps is.

TK

[Brambledog]

Welcome Cheryl

Having CRPS is obviously horrible, and I'm sorry you've had to join the club The folk on here are great - supportive and funny and always someone here to understand...

Ah the name game...lol. RSD is the old name, CRPS is the new. Folk who've had it since the old name tend to stick with RSD, more recently diagnosed people tend to use the new name CRPS. And it varies by country too, I think RSD is in much more common usage in the USA, CRPS in the UK. Whichever you use, we know all too well what you mean!!

Take care and hope today is a good day.

Bram.

[cheryl1593]

Originally Posted by pooh_ac

Welcome to "our" world! I have had this big nasty thing 1998, I have gone through the "You have RSD" " No they have changed the name to CRPS" Then CRPS 1, AND CRPS 2. SSDD (same ***** different day) I expect them to revert to RSD again any day! It is much easier to just do the RSD ( my insurance company questions CRPS but not RSD)

Z

Hello to you, I opened my computer...I pad whatever this thig is.......started reading here and just cried...still crying.....because everyone here understands what I have been through...well not exactly I know....but RSD!!! WOW does this hurt

I am sorry to people here that you hurt so bad. I know!
I survived 10 years without correct diagnosis. Nobody listened to me and I learned how to hide my pain after a couple years. So I worked as a home health nurse for the last 10 years. I should have known about this right? Well, i only had one patient that had RSD, and we were not given very much information about pain syndromes....hmmm wonder if DEA had anything to do with that....who knows. So no I did not know anything about a pain syndrome that causes cold extremities.....before they took the extra rib out my hand was turning ice cold and I was in horrible pain. Following surgery I was unable to do any PT. my surgeon called my PCP and told him no PT. so I just got stronger by my own means.......I was given pain medicine back then and it did help....some.

After 4 years and 2 rib removal surgeries I got myself better and went back to work....I had bills to pay.

I told many people my pain was bad, nobody listened.....I just thought (I had a birth defect) and I was always going to have pain.....just get on with my life.

My condition deteriorated over the last 10 years. I lost my family,friends, everything. It was like I had leprosy, nobody understood. Not even me. Until now.

A doctor in Houston (pain specialist) finally heard me and believed me and ordered some kind of block......he goes oh, you have CRPS type 2 and sent me home with new medicine. A patch, I put it on and in 2 hours later I was pain free for the first time in 10 years. That was the 27th. My 50th birthday was the next day June 28th. Birthday miracle I say! I cried the whole time....but tears of relief, happiness,joy.....like I cry now. OMG.......how did I survive that? I don't know
Sorry post so long...I just need to write this.....process in my brain what happened to me. I have tried to be brave, but there were times I just was so confused.....I did not know there was pain....and OMG PAIN.

I was saying I had bad pain.....right?

So sorry we are all here. I am just so relieved beyond belief, you just can't imagine the relief......after all this time.

I hate that the medical system changes the names around of things. They have been doing this a long time......

I think the reason I went undiagnosed for so long is that I had surgery to remove the rib....which stopped the progression of RSD. But I still had the pain part and nothing else. My hand does not get cold anymore, I don't have pseudo angina...or the profuse sweating. Only had the pain left after surgery. Which I was happy for a long time as I did get some better after surgery.

I do have allodynia and some other things and I told people about it along the way.....nobody believed me all that time.

Wow. Just wow. Thank you so much everyone here you all made me feel so much better this morning and I am NO LONGER ALONE! That is the most important part to me.

I hope I can be some help here to everyone and I will give support back as I know we all need that. I understand fully the suffering of RSD! Thanks guys.

[KathyUK]

Hi and welcome! Sorry you've got CRPS (RSD is the old name) and have had to come here, it seems a bit mean being chirpy to a new person here when the reason they're here is so cack.

There was a good thread recently about the name. I personally am glad it's not called RSD any more, but can understand the SSDD description. Complex Regional Pain Syndrome describes it so much better than Reflex Sympathetic Dystrophy but the acronym leaves a lot to be desired.

[Jimking]

Well, there were the older names that go way back like---causalgia and Shoulder-Hand disease, and many others it seems.


algodystrophie, algoneurodystrophy, peripheral trophoneurosis, Morbus Sudeck,
algodystrophie, major causalgia, post traumatic algodystrophy, Sudeck's, osteodystrophy, atrophie de Sudeck, minor causalgia, post traumatic dystrophy, pourfour du Petit syndrome, causalgie, minor traumatic dystrophy, post traumatic neurodystrophy, neurovascular dystrophy

[AintSoBad]

I think they should take the 'Regional' out of CRPS. Because once you get it, it's bound to spread, and it is complex. Regional seems too restrictive to me, which is why I prefer RSD. or, just CPS....

Hope ya'll are having a good day!


Pete




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