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Don’t GIve Up
by: Linda D.
on Tue, Apr 22 2008
In May of 1991 I slipped on a wet floor and hurt my left knee. At 27 and an active mother and college student, I just figured I would be sore the next day or two. At this time, there wasn’t as much known about RSD as there is today. After nothing was found from the orthoscopic knee surgery the doctor decided it was all in my head. Of course the pain continued and got worse. I kept going to doctors to try to find out what was wrong with me.
I finally found a doctor who knew about RSD in a different state in Dec. of 1991. Through the years the RSD spread through my whole left leg and foot up into my groin and through all of my right leg and foot. There were days I just wished I would not wake up (when I got to sleep at all). I talked to my doctor about the idea of him removing my legs because I couldn’t used them to walk anymore do to the pain. He got me into a study for a new medicine called SNX-111 now called Prialt. It was administered through a infusion pump. It helped enough with the pain that I could use a cane to walk some and it wasn’t addicting like some other drugs used for pain and didn’t make me feel drugged all the time.
I was on the study for around 6 1/2 years before the FDA aproved it. Over the years I ended up back in a wheelchair if I wanted to go more than a few steps but it gave me back some of my life it wasn’t perfect but I didn’t just want to curl up and died instead of facing another day of extreme pain. I was on a high enough dose that I went in the the doctor’s office once a week to have my pump refilled plus the other meds I was on. With all that I still described the pain to people that would ask like a toothache from watst down, a real bad sunburn on top of that and an invisible man who stabbed me with a knife at unexpected times. In Dec. of 2005 I was waiting for another infusion pump because mine had quit working again. I woke up on Dec. the 10th, a Saturday morning and realized that I had slept longer than the hour or two I usually did. I had been in more pain without the infusion pump working but that morning I realized that I felt good. It wasn’t until about noon when I accidentally hit my left leg and realized it didn’t hurt!! So I intentially tap my legs, they didn’t hurt more than you would expect on someone without RSD!!
AFTER 14 1/2 YEARS OF RSD IT LEFT AS QUICKLY AS IT CAME!! I am back in college again to be a RN, and have started doing thing I never could before. I can have my grandchildren sit in my lap now, I can wear pants now (which I couldn’t for years) I even have warmth back in my legs and feet and so much more. I am telling you all of this so that you don’t give up on faith and hope. I know it is so difficult to live with RSD but somethings can help you survive this terrible pain. Prialt is a good medicine to help deal with the pain and this is not an unknown disorder like it was in 1991. Faith in God helped alot and a loving family. Please hang in there I have heard that new things are being tried to help RSD. I do not know of anyone else that has had RSD go away after 14 1/2 years but if it can happen to me it could happen to you.
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April 2008
- my husband has also wanted his foot removed - by BA - (Tue, Apr 29 2008)
My husband was injured on the job 5 Years ago, what started out as a broken ankle is now RSD from the waist down. His ankle did not heal and the doctor fail to notice this.
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- living with rsd - by KKR - (Tue, Apr 29 2008)
I have been living with rsd since 1995 when i had both my feet operated on for biladrial nuromas [bilateral neuromas] as soon as i woke up from the surgury i notised that my feet were cold that was very unusual for me.
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- mr - by dave - (Mon, Apr 28 2008)
4 months ago i had a cycling accident and suffered a broken hand and dislocated finger. A plaster was put on for 6 weeks together with a finger splint.
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- Don’t GIve Up - by Linda D. - (Tue, Apr 22 2008)
In May of 1991 I slipped on a wet floor and hurt my left knee. At 27 and an active mother and college student, I just figured I would be sore the next day or two.
[more..]
- What Now? - by Sherica - (Mon, Apr 21 2008)
I was in a car accident in June of last year. I now have partial seizures herniated and bulging disc in my upper and lower back.
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- My life has been severely changed. - by Michael - (Mon, Apr 21 2008)
In June 1989 I had a left knee arthroscopic surgery and was put to sleep. When I awoke I had such SEVERE BURNING PAIN in that leg that I could not lower it to the ground.
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- living with RSD and what helped me - by sbb - (Mon, Apr 21 2008)
I am a 39 year old female and work as a nurse. I was coming down steps outside my apartment when they dropped out from under me and my left foot was struck with a iron step. After multiple foot surg. I developed RSD.
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- RSD - by ANESSA - (Fri, Apr 18 2008)
HI, I AM A 37 YR OLD FEMALE, WHO WAS INJURED IN 2002, WHEN I WAS WORKING AS A VET ASSISTANT, MY BOSS AND I WERE ATTENDING TO A ILL CAT, WHO USUALLY WAS A NICE CAT BUT VERY ILL AT THE TIME, WE PUT A IV BACK INTO THE CAT, (TRIED TO) BUT INSTEAD HE HAD LATCHED ON TO MY LEFT HAND AND WRIST AND BIT ME 17 TIMES, THE DR STOPPED COUNTING.
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- I’m sorry for your pain of RSD/CRPS, lets fight this thing together!! - by kriskaleigh - (Fri, Apr 18 2008)
I was injured over 3 years ago @ work when some equipment fell on my right shoulder & hand.
I not only had the original tearing and damage within the shoulder, I immediately had edema, purple-blue skin mottling
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- Diagnosed with RSD? WHAT? - by SHARON - (Wed, Apr 16 2008)
I am a 37 year old women and life as I knew it would change….
MY STORY
FEB 2007-Well, it started back in Febuary 2007 when a car slid on ice and headed for my LandRover.
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- One of the lucky ones….so far - by Sherry - (Wed, Apr 16 2008)
I had surgery for pronator syndrome on both arms. This was almost 3 years ago. My left had kept burning, finally, reluctantly my surgeon (if you want to call him that) wrote on an appointment card “RSD early” and told me to give this to my therapist.
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- RSD - by Tamika - (Mon, Apr 14 2008)
I was told i had RSD about 3years ago. since then i’ve had injection in my neck and 5 operations.The pain from RSD is so bad.
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- RSD - by stan smith - (Mon, Apr 14 2008)
My name is Stan. I am 49 years old and was injured at work 2/9/06. My left hand & arm (shoulder) was mangled in in a magnetic drill press.
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- I DID’NT KNOW WHAT RSD WAS - by MARIA D - (Fri, Apr 11 2008)
I WAS DIAGNOSED WITH RSD 2 YEARS AGO IN MY LT LEG AND 6 MOS IN MY A RIGHT ARM THE PAIN WAS PAINFUL THE BURNING DIFFERENT COLOR OF MY SKIN CANT TOUCH MY LEG OR ARM.
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- living with rsd - by andrea - (Thu, Apr 10 2008)
hi i’m a 36year old female who has had rsd for 3 years now.i have had 2 strokes and a heart attack from this it seems hard to go on at time but i do .
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- bloody hell - by cc - (Wed, Apr 09 2008)
i’m wondering if anyone has considered, or actually decided to have their foot below he knee] removed due to rsd.
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- Darn that Manhole - by Christine - (Tue, Apr 08 2008)
On December 2, 2006, I went out with my husband and a friend of ours for my birthday. We took the trolley downtown so that we wouldn’t have to drive at all. We had such a wonderful evening out. Patrick danced (club dancing type) for the first time in 13 years. It was magical.
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- Felicity - by Felicity - (Mon, Apr 07 2008)
I am a 54 year old female, investigation for RSD started in 2001 and some years later got the diagnosis. There is hope, together, sharing our stories, we can also share our strength hope & courage.
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- RSD - by Rick - (Fri, Apr 04 2008)
My wife has always been an active person. Loves to walk and dance and garden. Five years ago she pushed a bucket of compound spackle with her foot which having her hands full.
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- New to RSD forum - by Bill - (Wed, Apr 02 2008)
Back on September 29 ‘07 I fell from a ladder and shattered my calcaneus (heel). Had surgery to repair it (titanium plate and 12 screws). The injury has since healed almost fully according to the docs and MRI’s, however my foot still swells and aches at times.
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