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 03-26-2011, 09:56 PM #1
jeffburns jeffburns is offline
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hi, have rsd since 6/26/2006.i am in pain most all the time and i do not no if i can take it any longer.i try to be happy and not in a bad mood but it is getting very hard.i try to talk to my wife about it but i don,t think she understands.i wish i had someone to talk to who has rsd so thay can relate. thanks for letting me vent.
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Old 03-27-2011, 03:25 AM #2
gabbycakes gabbycakes is offline
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Originally Posted by jeffburns View Post
hi, have rsd since 6/26/2006.i am in pain most all the time and i do not no if i can take it any longer.i try to be happy and not in a bad mood but it is getting very hard.i try to talk to my wife about it but i don,t think she understands.i wish i had someone to talk to who has rsd so thay can relate. thanks for letting me vent.
Hi jeff,

Sorry to that you are in so much pain but on the good side you seem to have a positive attitude. This is a wonderful site for friendship and great information about RSD.

Are you with a PM Doctor for treatment? Where is your RSD mainly located? I'm right side upper extremety and have been under control, I don't want to say remission, for a good 3 years now. I still deal with a slight amount of pain,functioning issues and on occassion a flare which can still get hectic, but I have come from nothing to pretty good at this point. I also have PN which is in the same area.

Having a good team of doctors for me was key. I have had a ton of treatements including ketamine which I think works but don't like the side effects at all. I actually think it was the main thing that help the major symtoms of RSD. For me was of course pain in my arm, migraines which I never had in my life before this all happened, the burnign pain which is the worse, and the sensativaty. Which honestly at this point I really don't get any of it any more, it has to be a really blue moon/flare for this all to come back. I can't even remember the last time I had a mirgraine. Believe be I went throught hell from 2003 - 2008. Now I just see my PM for maintenance of medication which I am on almost nothing and a occassional epidural if things seem to get bad.

Nice to meet you.

Gabbycakes
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Old 03-27-2011, 01:00 PM #3
SandyRI SandyRI is offline
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Quote:
Originally Posted by jeffburns View Post
hi, have rsd since 6/26/2006.i am in pain most all the time and i do not no if i can take it any longer.i try to be happy and not in a bad mood but it is getting very hard.i try to talk to my wife about it but i don,t think she understands.i wish i had someone to talk to who has rsd so thay can relate. thanks for letting me vent.
So sorry Jeff. You can always come here and talk to us. Its really hard for anyone else to understand what we are going through. Scroll through the old posts and you will find lots of helpful information in regards to meds, docs and treatments. Many times just getting your pain under control can really help you get to a better place emotionally.

the RSDSA website has links to lots of RSD support groups across the country.
Go to RSDS.org.

Good luck, Sandy
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Old 03-27-2011, 05:38 PM #4
keep smilin keep smilin is offline
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keep smilin keep smilin is offline
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Originally Posted by SandyRI View Post
So sorry Jeff. You can always come here and talk to us. Its really hard for anyone else to understand what we are going through. Scroll through the old posts and you will find lots of helpful information in regards to meds, docs and treatments. Many times just getting your pain under control can really help you get to a better place emotionally.

the RSDSA website has links to lots of RSD support groups across the country.
Go to RSDS.org.

Good luck, Sandy


Hello Jeffburn,


I want to welcome you here and say that I am truly sorry for your RSD.... We can all understand here how desperate you are...It is soothing to our soul to shout out and ask questions and we each know the cry for help...RSD is no doubt an ugly animal... An animal the is hard to live and reckon with..it is a daily hurtle to live and stay positive with it. I can relate to your day of your Dx as I too was given my DX on 6/26... Only in 2007.... AND that is my birthday also... it's ok as I can remember my DX. Date pretty easily as on my birthday each year since...I can mark the ugly anniversary of my friend..RSD...Diagnosis is very important, early the better for any kind of remission, so I guess it's good, I at least know what is wrong with me ... no remission for me either..24/7 gut wrentching pain.. I am unable to take meds due to a very sensitive tummy and can't get Ketamine approved so I just look in my heart all of the time to look for something happy to help over ride my pain...

I wish you well...you have just made new friends here...Please, lean on us as we understand what you are going thru..everything!!!!

Hugs, Kathy
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Old 03-27-2011, 06:35 PM #5
lorigood243 lorigood243 is offline
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Dear Jeff

there are wonderful people here that really care and will give you great advice. please tell us where your RSD is and how it happened so we can help advise you. I have internal RSD caused by gallbladder surgery i had in january 2005but i just got diagnosed 9 months ago. its been a hell of a ride!

to Kathy: I had no idea that you cant take any pain medications???your attitude is amazing! My heart goes out to you, i dont know how you push through your pain. there isnt anything you take to help ease your pain at all? since you said insurance doesn t cover the ketamine...can you ask for help through social programs or church donations? All churches have out reach programs..you dont have to go to their church to get assistance. I get financial help from churches often since i have been sick. i get help with food and utilities so i am sure they will help you.

Jeff I hope you find the comfort and friendship that you need here with us!
Lori
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Wishing you a day of pain free movement that turns into forever!
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Old 03-27-2011, 08:02 PM #6
jeffburns jeffburns is offline
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jeffburns jeffburns is offline
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Default rsd

thank you,all of you.my rsd is in my right foot,ankle and leg.i can only work 2 hours per day do to the pain.my workers comp.law judge has my at 75% dis. it is nice to talk to to outher rsd,ers thanks.
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