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This section is a place to share stories about Living with RSD
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Better Late Then Never!!!
by: Keith
on Fri, Aug 28 2009
Ahh, better late than never, seems to be the theme here for my story. Hi, all, my name is Keith and I’ve been living with RSD/CRPS for 20 years, 22 to be exact. When I was 15, I got hit by a van riding a dirtbike to cross the street from the field I was in to go back to the house, something my friends and I did all Summer long.
On August 4, 1987 @ 9:06 am (that’s what the time said on my busted Swatch watch), my life was forever changed. I had no helmet on the impact of the van forced my face into the woman drivers’ windshield. My face dented her steering wheel. I suffered a broken jaw, a cracked orbital socket, 3 cracked ribs, a collapsed lung, 6 breaks to my left leg, 2 of which were compound fractures. My left leg was impaled by the dirtbike’s footpeg and that went clean through the lower part of my calf. I have a 14″ scar on the inside side of my left leg centered around what’s left of my knee which was shattered. Needless to say there is major tissue loss to my leg. So I was in constant pain all the time. Every step was and still is, agonizing.
In 2005 I tripped over where the carpet meets the tile and re-broke my already destroyed leg. I gave myself a tibia plateau fracture and the ER doctors spent 8 hours trying to determine where the break was and when they finally did I was scheduled for surgery the next morning where the surgeons implanted cadaver bone and grafted it to my own, as well as installing 3 screws to hold everything in place. 3 months later I was scheduled for additional surgey to “correct underlying issues”. In one shot the screws were removed, they performed a debrievement on my knee, removed half the miniscus from my knee, removed all sorts of scar tissue, performed a lengthening to my achilles tendon, as well as a release and fusion of all my toes on the left foot. I believe, now, it made matters worse. Then in 2007 I tore something in my knee at work pulling a pallet jackand that was it for me. I haven’t worked since.
In 2007 I applied for disability through Social Security and two weeks ago I went to an Independant Medical Exam, scheduled by my Lawyer, and was diagnosed with Type 1, Stage 3, RSD/CRPS. I was floored that this was the first time I had ever been told of such a thing. The Doctor was amazed that I went for as long as I have without being diagnosed with this RSD/CRPS. I had explained that with no money, comes no insurance, and then your at the mercy of the states indegency programs and medicare programs, where you never see the same doctors twice. So he understood.
So for 20 years I’ve had to deal with the prejudices, and stupidity that comes with this disorder/disease. I’ve dealt with the probing questions from doctors who thought I was nothing more than a pill popping junkie, just looking for a fix. All I know now is that for those of you who have recently hurt yourself and have been diagnosed with RSD/CRPS. You need to get it taken care of right away, don’t suffer as I have and am.
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August 2009
- RSD - at last a name for the pain. - by BJL - (Mon, Aug 31 2009)
Hi my name is Brenda. I have just found out I too have RDS/crps.
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- living with RSD[full body] - by LEANNE - (Mon, Aug 31 2009)
Hi my name is leanne i am 40 and i have 3 children and i have been living with full body rsd and fibromyalgia etc for 8 years now.
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- RSD or They Think We’re Crazy - by dab - (Mon, Aug 31 2009)
I fell and sprained my ankle; several different opinions over the next month as to whether there was a fracture or not. Work it; Stay off of it and keep it elevated and iced. Which one?
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- March 2000 changed my life… - by Delores F.-C. - (Mon, Aug 31 2009)
Im 55yrs old. After my left knee revision(2nd knee replacement)on my left knee, the diagnosis was Compartment Syndrome due to the swelling and redness that never went away.
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- Better Late Then Never!!! - by Keith - (Fri, Aug 28 2009)
Ahh, better late than never, seems to be the theme here for my story. Hi, all, my name is Keith and I’ve been living with RSD/CRPS for 20 years, 22 to be exact.
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- Husband - by EB - (Tue, Aug 25 2009)
My husband was diagnosed with compartment syndrome in both of his legs. In 2007 he has bi-lateral compartment releases done on both of them at the same time. After a long recovery from the surgery it seemed that I couldn’t touch his left leg.
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- Hanging on, hoping things will change - by pamela e. - (Mon, Aug 24 2009)
I had a nerve block last wed. for the RSD in my right hand. I am bereft about losing this so important part of my body. So far there hasn’t been any response to the nerve block.
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- A Long Journey - by Debbie - (Mon, Aug 24 2009)
I have had RSD since 2003 and have found that attitude is the best way to handle the pain. You must remain as positive as you can.I have a SCS and try to remember stress aggrevates RSD.
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- Living with rsd - by Jerrie - (Mon, Aug 24 2009)
I got rsd from carpal tunnel surgery in Sept 2008 in about a month the pain from my fingers to my elbow was so bad i went to local er 2 times but sence it was work related thay can’t treat
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- Living with RSD - by Donna S. - (Mon, Aug 24 2009)
Well back on Sept 22st 2006 I broke my hand.6 weeks after I got my cast off. My hand wouldn’t move and I couldn’t handle the pain.
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- RSD - by Patricia - (Mon, Aug 24 2009)
I have been living with RSD since a right knee operation in 2005. I had two cortisone injections into the knee but the pain did not go away and I was still unable to unaided.
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- no life with rsd - by lance - (Mon, Aug 24 2009)
I’am a 45 year old male who has been existing with rsd for 9 years.I say existing because thats all it is. The rsd is in my right hand and wrist.
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- rsd struggles - by Amy - (Mon, Aug 24 2009)
I am a 41 year-old mother of two who was diagnosed with rsd a few weeks ago. I have had two spinal fusions in the last three years. I had a fall down the steps in my home about a month ago, and thought I had broken my leg.
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- RSD? - by PW - (Mon, Aug 24 2009)
I have been living with pain for the past 2 years. It is in my left hip and left leg. No surgeries have been required for this. Dr. after dr.s have no idea. It is not my back nor is it my hip. 3 injections for my back, injection in my hip, nerve block, spinal stimulator and physical therapy have not helped at all.
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- 26 yo female diagnosed with RSD, Nerve Block 09 09 09 - by Faith - (Tue, Aug 18 2009)
About 2 years ago I decided to be really brave and snowboard down an extremely high and difficult mountain. Not the best idea since I hit some ice and couldn’t stop myself.
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- Living with CRPS - by laura - (Mon, Aug 17 2009)
I am 24 years old and was in my final year of my Nursing career before i had my accident and have lived with CRPS type 2 now for 2 and a half years.
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- Clueless Doctors on R.S.D./ I found RELIEF - by Marty & Kim - (Mon, Aug 17 2009)
My wife 17 years ago sprained her right ankle, to this day I or no one else has ever touched her foot!
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- faker… - by cassidy - (Fri, Aug 14 2009)
i have causalgia in my right hand it started there and has been working its way up. its about to my elbow now. i went eleven months with people telling me i was a faker im a baby…my own mom thought i was faking i think that hurt the most…but what i want to know is how can you fake it swelling and changing colors?
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- It Stinks… but My Savior can heal! - by Linds H. - (Thu, Aug 13 2009)
I am twenty years old. A runner, a Personal Trainer for obese children, a Christian, a College Student and right now a person that is being completely consumed by something that just happens. I tripped over one of my clients…broke my ankle… ended up with the most painful thing I have ever endured.
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- Nurse caused my RSD - by E K - (Wed, Aug 12 2009)
In February 2009 I got a bad case of food poisoning. After four long days of being sick I finally gave in and went to the hospital. While there I had one nurse try 5 times to start an IV unsuccessfully. Then a new nurse came in to try and start the IV. The instant she inserted the needle I felt intense pain and it felt like liquid fire in my hand.
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- My RSD Story - by Katie - (Tue, Aug 11 2009)
The fall of my senior year of high school (2005), I strained my hip flexor muscle in dance class. I went to pt for about a month or so and then returned to dance. My hip was reinjured in another dance class around February of 2006. I went back to my therapist, who told me that she thought I had torn something in my hip.
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- My Story by Danielle - by Danielle - (Mon, Aug 10 2009)
I was 32 yrs old when I had Carpel Tunnel surgery, and in the end (not drug seeking behivior) I was diagnosed with RSD, by a phenomenal Anesthesiologist, who treated me agressively and consistantly.
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- living hurts - by Rachel - (Fri, Aug 07 2009)
hi my name is Rachel and i am 16 and i am living with RSD for almost 5 years.
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- RSD Pain - by Darla - (Fri, Aug 07 2009)
I have been told I have RSD and I have been trying for disability and keep getting turned down. I fell 2 1/2 years ago and still have pain.
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- RSD (worst thing ever) - by Alaina D. - (Thu, Aug 06 2009)
When I was 7 1 1/2 2006 years old I got rsd in my right foot and leg by tripping on my baby sisters toys and twisted my ankle around! Everybody thought that I was faking, but I knew I wasn’t! We didn’t find out I had rsd until May of 2007!
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- rsd help with exercise pain - by Eric - (Mon, Aug 03 2009)
I fractured my radius and ulna at the wrist Oct 31 2006. After two and a half weeks my hand and forearm became so swollen that the cast no longer fit and had to be removed.
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- Living with RSD is not for Wimps - by pollyb - (Mon, Aug 03 2009)
I was diagnosed with RSD about 15 years ago. I was taking a morning walk and about 2 miles into my walk my foot started hurting. When I got home, my foot started swelling and I could not put my weight on it.
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