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This section is a place to share stories about Living with RSD
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Sister with RSD
by: Amy P.
on Wed, Nov 05 2008
My name is Amy and I have a sister that has been battling RSD off and on (mostly on) since she was a teenager. I really feel for those of you afflicted yourselves and those of you who are the support system for your loved ones. Never have I seen such ignorance when it comes to having to understand a condition that is for the most part a mystery to the medical world.
I struggle everyday living so far away from her that I can’t do for her what I want to. Imagine not being able to use your arms but being so strong in the mind that you refuse to give up thus causing you severe pain. Imagine the fear of becoming dependent on the medications you have been prescribed because you need them daily, making it so you only take them when you can’t take it anymore. My sister has not had a pain free day in more than three years. I complain when I get a headache that goes away after taking an over the counter pain reliever. My family and some of the other people that surround her just don’t understand the peril that she and others in her situation are in.
My sister is financially ruined because of the cost of her treatment and the state of healthcare in this country. She can not afford the emotional support she needs and deserves. I am so sick of hearing people that don’t know what they are talking about judging her and thinking that she is fishing for sympathy. If she talks about it too much it is because this evil disease has consumed her and taken away everything she was before she got hurt and everything she had hoped to be in the future. She, like many affected by this silent disabler, is broken not only in body but in mind and spirit. How can we rally together to bring more awareness to this condition and maybe get more funding for research? I have only met one other person in my travels afflicted with RSD and almost no one has ever heard of it.
Peace and prayers to all of you afflicted. To those who love them I only say please do more for them than they want you to. They are fighting to hold on to their pride and independence. Saving them from doing something that is simple for you can save them from aggravating a limb(s) that can cause days worth of crippling pain. They will never ask you to vacuum their house or pick up a gallon of milk for them or take them for a ride in the country if they can no longer drive but you should do it anyway and be happy to do it for them. Don’t give them a chance to refuse your offer the less that is said the less of a chance there is for you to make them feel disabled.
I love you Erinn and I pray every day that you will be well someday.
Comment on this
Comments
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Sat, Jan 03 2009
Hi Amy,
I just wanted to commend you on your post. I have been living with RSD for over 20 years. Your post was terrific; I liked especially you...Read
November 2008
- 3 years in and Scared can you help me? - by Snowflake - (Mon, Nov 24 2008)
3 years ago I met a man and fell in love at first sight. I know how corny that sounds, and am not a overly romantic fairy-tale driven woman. I have spent the past three years in this relationship and I knew upon entering the relationship that he had RSD.
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- Resentment - by Cheryl - (Mon, Nov 24 2008)
Hello my name is Cheryl, it has only been a little over a year and half that I am suffering from RSD but it seems like a lifetime.
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- 14 years with rsd - by maryann - (Fri, Nov 21 2008)
hi my name maryann. I got rsd 14 years ago while working at a deli . I sliced my two finger on my right hand and it went down from there.
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- Dealing WIth RSD - My SECRET!! - by Sarah P. - (Fri, Nov 21 2008)
Hi my name is Sarah. I am 15 years old and have had RSD for a little over a year.
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- My 8 year Old Daughter - by michelle - (Fri, Nov 21 2008)
My 8 year Old daugher had broke her leg 2 years ago and was suffering ever since with pain and swelling and bruising.
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- RSD - by Ursula S. - (Thu, Nov 20 2008)
I have been suffering from RSD for the past 13 years during which time I have made some remarcable discoveries, truly of phenomenal magnitude especially as it relates to vision changes.
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- New to all of this - by Caroline - (Tue, Nov 18 2008)
Hi, my name is Caroline, I am 42 years old, happily married with two daughters and living in Canada. Today I found out that I have RSD.
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- Changed Forever By RSD - by Cathy L.H. - (Tue, Nov 18 2008)
Hello everybody. I’m writing my story in the hopes that it will help others that live with RSD or any other chronic/terminal disorder, pain oriented or otherwise.
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- I can fight this - by Linda - (Thu, Nov 13 2008)
Turned 40 this year. Did not have a problem with turning 40 but wow this has been quite the year. Broke my left foot in August (5th metatarsal break) was put in a aircast.
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- Hi It’s Chris again!! - by Chris - (Thu, Nov 13 2008)
I wrote you guys and girls, all suffers of rsd,a lettter about what i have been through with this terrible, grossly misunderstood disease.I wrote it in October so if you wish to read it just click on archives and then click the month of October.
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- Mr. Rsd - by Matt - (Thu, Nov 13 2008)
Rsd can be hard for a regular Dr. to diagnose. I lived with it for 8 years and was put on 400 MG of oxycontin a day morphine patches. I was zombie and lost my wife, kids and business.
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- RSD - by SMB - (Wed, Nov 12 2008)
hello all, i have always been active, sports, bike riding never one to sit around, i have hurt myself over the years especially my left foot.
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- RSD early diagnosis - by josephine - (Mon, Nov 10 2008)
I had a very bad break to my right wrist and developed what I learned is RSD or complex regional pain syndrome.
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- living and fighting r.s.d - by amanda - (Mon, Nov 10 2008)
my story started 17 years ago along time i was i was mature studient a costume deisgner had a great skill till this started yes and hell began,
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- My life with RSD - by Tiffany - (Fri, Nov 07 2008)
Hi all I am a 20 year old female and I attend Nassau community college and studying criminal justice (Forensic Science). I had a major knee surgery when I was 14, everything seemed to be okay until one morning I woke up with sting sharp pain.
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- discovery of rsd - by ah - (Thu, Nov 06 2008)
diagnosed with degenerative arthritis of left shoulder and knees at 53, after ankle sprain in oct. 08, rsd seemed to be developing symptoms.
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- Living with RSD…. - by Heather - (Wed, Nov 05 2008)
I am a 29 year old single mother of 2. More than a year ago, I woke up with a serious pain in my neck. Just thinking I slept on it wrong, I let the pain worsen over a few months. Finally submitting to the pain and the loss of function of my right arm, I went to the doctor to find out I had a ruptured disc that was pressing on my spinal cord.
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- Sister with RSD - by Amy P. - (Wed, Nov 05 2008)
My name is Amy and I have a sister that has been battling RSD off and on (mostly on) since she was a teenager.
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- 10 seconds for change….. - by Julie - (Wed, Nov 05 2008)
Hello, my name is Julie and I am a wife and mother. I am 36 years old and I live with RSD of my knee.
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