We’re looking in this Friday series at pain organization websites that have great sections for patients. Today I’m featuring 2 sites on the neurological pain condition CRPS (Complex Regional Pain Syndrome), also called RSD (Reflex Sympathetic Dystrophy).
Reflex Sympathetic Dystrophy Syndrome Association of American
RSD-WorldNews : RSD/CRPS World News Group (suggested by Jeisea)
CRPS is a neurological disease with pain as a primary feature, along with temperature instability and movement problems. It can affect a tiny area of the body, or spread throughout a patient’s body.
Some great features from the 1st website:
- support groups
- inspiring patient stories
- small research grants
and from the 2nd:
- selected news about CRPS
- a place to ask questions
I hope you check out their sites!
You’re invited to send in your own recommendations of professional organizations related to pain, along with why you like them, to Ask the Doctor, and I may use them for future Friday posts.
(My disclaimer states that, while I believe these websites that I feature are sound and valuable sites, I don’t monitor what they post, and as such, I don’t specifically endorse the information or services provided by them. These organizations are solely responsible for the information they provide.)
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4 responses so far ↓
Nickie // Jun 1, 2007 at 8:52 am
Thank you for all of these great resources. They are definitely appreciated.
MARTY // Jun 2, 2007 at 2:33 am
THANKS. MORE INFO THE BETTER FOR ME!
AFTER CALCANEAL SURGERY OF 5+ HRS
REQ. 12 ONE AND HALF INCH CREWS, SOME SMALLER ONES, TITANIUM PLATE AND BITS OF CADAVER BONE (GUESS MY HIPS HAD GIVEN ENOUGH TO FUSIONS I’VE HAD?,) I KNEW WITHIN WEEKS, I WAS SUFFERING FROM MORE THAN THE PAIN OF THE INJURY/SURGERY (ALTHOUGH IT IS BAD ENOUGH.) I WENT 3 YRS UN-DX’D. UNTIL MY PAIN MGT DOC SENT ME TO ANOTHER. HAD NEVER HEARD OF CRPS/RSD, LEFT OFFICE FEW HRS. LATER ON MORPHINE (FROM DR. KNOWN TO WRITE FEWEST SCRIPS FOR IT THAN DR.IN AUSTIN–MY PHARM ASSUMED I HAD LESS THAN WEEK TO LIVE WHEN HE SAW DOC’S NAME, MINE AND RX) SCHEDULE FOR 3 SYMPATHETIC LUMBAR BLOCKS, PSYCH TEST AND A DVD ON SCS’. THAT WAS 3/28 AND PLAN TO HAVE IMPLANT THIS MONTH. HORRIBLE THING TO COPE WITH BUT I AM GLAD TO HAVE FOUND THIS DOC AS HAD YET TO TELL ANYONE THAT GOOD FOOT AND SHIN WERE GETTING AS SENSITIVE AS BAD ONE—-THOUGHT I WAS GOING CRAZY. I HAVE BROKEN NECK TWICE, 6 VERTEBRAE, SHOULDER 3 TIMES, ELBOW RECON, SHOULDER RECON–NOW BEYOND RPLCT SGY-”LEFT ME NOTHING TO HANG TO NEW SHLDR TO.” I HAVE WON 2 OF 3 GOLF TOURNS PLAYED IN THIS YR (VOMITING INBUSHES FROM PAIN MIN OF 6 TIMES IN 9 HOLES.) PUTS ME COMPLETELY DOWN FOR 2-3 DAYS BUT WORTH IT AS ONE HAS TO HAVE GOALS, STILL PUSH AND TRY TO DO TH5NGS YOU LOVE. OBV QUIT PRAC GOLF
AND MY ONLY PLAY HAS BEEN 3 TOURNS AND NOW WTG TILL AFTER GET SCS AS QUESTION SENSIBILITY IN IT AT AGE 59 BUT LOVE TO COMPETE. I AM AIMING FOR HIGHEST QUAL OF LIFE WITHIN REASON. SOON AS ALLOWED TO MOVE AFTER SGY, I HAVE DONE ALL I CAN FOR MYSELF, PUSHED PT TO POINT I HAD MORE FLEX. THAN DOC SAID POSSIBLE WAY HE HAD IT SCREWED DOWN. HAD TO RE-XRAY ENSURE I REALLY
DIDN’T HAVE A SCREW LOOSE!!!!!! PHYS AND EVEN MORE EMTLY, IMP TO DO AS MUCH AS ONE CAN FOR YOURSELF. HAD I EVER SAT DOWN IN A WC, I MAY WELL BE ONE OF THE REALLY BAD STATS OF THIS DISEASE. I COULD NOW BUT HAVE LRND OTHER THINGS TO OCCUPY MY TIME, CHALLENGE MY MIND AND WOULD KNOW I HAVE GIVEN MY BEST SHOT—AND WE GO FROM HERE.
ASKED BY DOCS WHAT WILL I DO IF SCS IS DISAPPOINTMENT, NO OR LITTLE IMP. WHAT WILL I DO? I JUST ASKED, WHAT AM I DOING NOW? BEST I CAN, IS ALL I CAN DO AND REALIZE MAY NT HELP ONE IOTA BUT IF DOES 50%, 25% 10% 5%–THAT MUCH MORE NORMAL LIFE I WILL HAVE FOR MY “GOLDEN YEARS.” THX AGAIN.
jeisea // Jun 3, 2007 at 1:10 am
Thanks for putting the news site there. Tony posted a valuable article yesterday about preventing chronic pain after surgery. Prevention is definitely better than cure. Nickie and Marty are so right information is empowering.
jeisea
HtCwP // Jun 3, 2007 at 10:30 am
Nicky, Marty, Jeisea - It’s good to hear that these sites are helpful to learn about. I do believe info is so important, as is sharing what we each have learned.
Marty, thanks for sharing your story. Your attitude will really help you. Let us know how the SCS goes.
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