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This section is a place to share stories about Living with RSD
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My life has been severely changed.
by: Michael
on 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. After many months of attempted physical therapy occupational therapy, and every pain reduction treatment there was, my surgeon sent me to a pain clinic located at U Mass Medical Center. There they performed a Sympathetic Block which the doctor told me I have good news and bad news. The good news was a diagnosis, the bad news was it was RSD which there was no known cure.
After years of blocks, various treatments, trials, my third intrathecal pump implant, dozens of oral medications, and now pain which has spread all over my body, I am desperate for a common link to this disease. You see, I was a mechanic, and when things broke, you troubleshot the problem and then fixed it. My wife says I’m looking for a reason and magical cure that doesn’t exist. Recently a doctor told me to come off my medications and maybe the pain will go away. I felt this as an attack on my creating this pain in my mind which upset me greatly.
Back about 17 years ago I did that exact thing on my own because no medications at that time were helping, and getting a narcotic prescription filled back then was next to impossible. After graduating from this rehab treatment, my pain was so bad that I cried and screamed constantly, which I am pretty much doing now almost 19 years after my onset of the burning pain. My ice cold purple knee and leg from 1989 have changed, and I have burning pain and numbness all over my body which no doctor has an answer for, but I know I’m not making it up. When the specialists I’ve gone to for all these new problems get confused they say the RSD has spread.
I’m having a hard time buying any of this. If this doctor which is the only one of many, many, doctors from many, many well known and prestigious institutions feels this pain is being created by the combination of so many meds, how come I had the bad pain without any meds years ago. I’m so upset and confused and desperate that I don’t know what to do next. I want to do what she said just for the heck of it to prove to her that the pain is real, not made up. RSD really sucks. Between doctors and nurses knowing very little about it, then questioning the reality of it really frosts my butt. I’m sorry to the readers who feel bad about this story, but I have tried every med, procedure, experiment, test, and whatever else doctors have thought of, and now this. The medical field isn’t perfect, but man, I’ve never questioned or have been questioned about authenticity before, and it really hurts me.
How could all the other doctors that treated me before, all the insurance payments made the social security payments made, never doubting me, and now this. I’m tired, hurting, and confused about what to do next. My wife, family and friends say to forget about what she said, but it still hurts. Good luck to those out there. I whole heartedly hope the best for you, and don’t blindly listen to and follow your doctors advise like I did. Use your god given brain and question them intently. They are only human too. I hope the best for you all.
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Comments
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Sat, Aug 16 2008
Michael, I too have rsd, but NOTHING like you have. My pain is manageable most of the time with meds and ice packs. If you have the financial backi...Read
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.
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- 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.
[more..]
- 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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