NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   RSD/CRPS is "Managed", not cured. (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/84205-rsd-crps-managed-cured.html)

info hungry 04-15-2009 02:55 PM

Hi Pete and everyone....my friends....I live by your triangle Pete...if you get thrown :Cowgirl:get back on the horse:Cowgirl:!!! I also understand everyone is different and there triangle might be misshapen at times. Just like Drs. practice medicine in hopes of getting it right we must keep practicing managing RSD no matter what hell or high water. Thanks Pete for the great speech. Words to live by. XX

Debbie

michelles 04-15-2009 04:14 PM

every time i come on to this site and read it gives me so much strength hope and just a feeling that someone can really say i know what you mean. i think also it is so important to use it i wish it was told to me sooner because rsd does set in and fast i didnt use it i left my foot in that walking boot and well i lost it, i cant bend my toes or ankle, foot is now in a inward position like a clubfoot and now 10months of having rsd and i am still in that walking boot because i cant put my foot in a shoe it is upsetting. to everyone who reads this i just want to say to all of you.... you are very inspiring, there are days when i hurt so bad and i think i cant do this anymore what did i do wrong and i want to give up but knowing all of you are going through the same thing and you keep going with a positive attitude, just know for me you all give me strength thank you

AintSoBad 04-15-2009 07:38 PM

I'd like to thank YOU, ALL, for your kindness, acceptance And your words of wisdom.
We're all a little bit different, but share a common enemy.

So, while I think I may have given a bit of a wrong impression about myself, while I KNOW these things, it doesn't necessarily follow, that I DO these things.

Sometimes, xxxx happens!
And, yes, like Debbie said, the triangle becomes misshapen.
Sometimes, so badly it's like a bouncing ball!

The weather, the next phone call, (the last phone call), what's gonna happen? And, on and on.
I find that my faith in God comforts me.
I know that I'm weak, in a society of sharks who devour weaklings.

Sometimes the weather kicks our tails. Sometimes, it's our emotions, our worry of this, or that.

I have just learned these things along the way, and most of all,
It's great to have a place like this to come to! And, have friends like you, all around,
who "GET IT"!

I have many friends, who don't know much of my "condition", just know I have one.

So there, I just stop in, to see what condition my condition was in.....


Keep the good "Management" ideas, debacles and what works and what doesn't coming in.
This is a wonderful place!
I thank You All!

Peace and Love,
Pete
ASB

Dew58 04-15-2009 10:25 PM

Thank You Pete
 
You're a sweetie-Pete!!!
Thanks for sharing and know you are appreciated here.
:grouphug:

Dew

lostmary 04-16-2009 07:25 AM

OK...Philly group. Do you all remember Jerry Blavat? when he was wild? Loved his for lovers only album. Really need to find it again. Remember fire house dances. Such fun

Hugs
mary
:grouphug:


I grew up in the Philly area, too (the South Jersey side). No wonder you are so cool! I still have family that lives in parts of southeast Pa., Delaware, and South Jersey. My parents retired to a little beach town on the Jersey shore, but spend the winter months in Fla. I miss Philly very much and can always hear that special "twang" in someone's speech, even 25 years after moving away!

You are so right. Thank you for your input. It can be very hard to stay focused, when every day brings a new set of challenges. I am missing the phych part from my triangle, and I think it is badly needed. Its been about ten months since my ortho diagnosed "probable" RSD, and four or five since it started to spread. The issues are never ending - WC denials, a lazy RI PM doc that screwed up, good Boston PM docs that deserve to be paid that haven't been because of evil WC adjusters, personal insurance that is junk (just when you think you've got a back-up you find out that United Health is a terrible plan and pays doctors NOTHING) a head that hurts a LOT, feet that are starting to not work well, etc. And spring just doesn't want to arrive here in this corner of the US.

Sorry - didn't mean to go off on such a rant. You are an awesome inspiration! I'm often a wreck and I haven't been sick that long. I don't know if I am going to be able to keep it all together as well as you. But I plan to try. I have so many responsibilities - kids, a job, a wonderful husband, a yard, etc. THAT is what prevents me from curling up in a ball under the covers with my head buried under a pillow every day!! Well, that and college tuition bills right around the corner....I NEED to keep moving.

Take care, Sandy[/QUOTE]

CRPSbe 04-16-2009 10:33 AM

Quote:

Originally Posted by AintSoBad (Post 496366)
And, yes, like Debbie said, the triangle becomes misshapen.
Sometimes, so badly it's like a bouncing ball!

The weather, the next phone call, (the last phone call), what's gonna happen? And, on and on.
I find that my faith in God comforts me.
I know that I'm weak, in a society of sharks who devour weaklings.

Sometimes the weather kicks our tails. Sometimes, it's our emotions, our worry of this, or that.

I have just learned these things along the way, and most of all,
It's great to have a place like this to come to! And, have friends like you, all around,
who "GET IT"!

ITA.

I somehow don't handle stress well anymore, it kind of triggers everything that's bad about my RSD and enhances it multiple times. I don't cope as well, is what I'm trying to say.

The stress can be all sorts, a weather change, a letter in the mail that freakes me out, a phone call, people saying the wrong things to me. It sends my heart in overdrive and I sort of panic.

Whether or not that is because of late stage RSD, I don't know. I do know that I never used to react to stress like that. I was like a stress fortress. Really bad things (not just a letter or a call) never freaked me out before. I was a rock. I don't know where it comes from, it's so atypical for me. And a letter or a phone call, I think to myself, who freakes out over that, well I do.

Sometimes I handle things just a little bit better, but... It's really strange to me, this kind of reaction. And still, I have it.

Anyone recognize this?

Most days, I can't stand to handle anything more than the RSD pain (and even that is hard)!

buckwheat 04-16-2009 11:11 AM

Hi Pete (aka ain'tsobad),

You have a wonderful atitude, but in my case the pain was really bad beyond any medical charts. I have gone into remission from RSD/TOS, no more pain. I see myself in recovery, I have some mild neuro. SX, but I really look at it like I will be cured.

Hugs, Roz

CRPSbe 04-16-2009 11:52 AM

Technically you can't be cured, as there is no cure for RSD. There are only treatment methods that either do something for you or don't, and in most cases there are lasting effects or there is lasting damage (like a limp, a serious handicap, limited ROM, etc...). It's like saying an MS patient, an aids or cancer patient is "cured". "In remission" is a far better way of putting it with a condition as bad and as poorly understood as this.

buckwheat 04-16-2009 12:01 PM

Quote:

Originally Posted by CRPSbe (Post 496797)
Technically you can't be cured, as there is no cure for RSD. There are only treatment methods that either do something for you or don't, and in most cases there are lasting effects or there is lasting damage (like a limp, a serious handicap, limited ROM, etc...). It's like saying an MS patient, an aids or cancer patient is "cured". "In remission" is a far better way of putting it with a condition as bad and as poorly understood as this.

Dear Marleen,

I 100% believe I will be cured. Hugs, Roz

CRPSbe 04-16-2009 12:03 PM

That's a nice attitude to have, fighting is a good thing, but it's also nice to take the facts into account.


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