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This section is a place to share stories about Living with RSD
Below are entries of those who have already shared their stories. We hope that you find their experiences helpful to your own situation.
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My 17 year old daughter has RSD
by: Penny
on Mon, Oct 08 2007
My daughter was diagnosed with RSD in April 2006. She feel on her knee and had a small scratch. Within 2 days her leg was extremely swollen, shiny and even the slightest touch was painful. To make a long story short within 2 weeks the leg was so bad she was in a wheelchair. She had gone thru numerous test by several different specialists and finally everyone agreed it was RSD. Because the RSD “appeared so soon” no one could agree on what her diagnoses should be. In May of 2006 I found a pain specialtist who gave her a sympathic nerve block and within 3 days she was back to normal. We all thought life was going to be fine until January of 2007 when she suddenly had to be rushed to the hospital for severe pain in her neck and arms. The MRI showed she had Chairi Malformation, her brain slumped onto her spinal column. The neurosurgeon told us the condition would require brain decompression but the surgery could not be done until her pain was under control. The RSD was back and it was causing pain so bad we could not touch her and the morphine pump she was on did not help at all. The same pain specialtists came to the hospital and gave her injections in her neck and by the next day she was 50% better. She had her surgery in March and went thru recovery and PT for 3 months. Again we thought all was fine and then 2 weeks ago at the end of Sept. she woke up in so much pain we had to rush her to the hospital again. She had injections on thursdays and we are hoping for as much success as before. Today she is having tingling in the bottom of her feet and pain in both legs. She has a great attitude and refuses to let this keep her out of school more than necessary. I would really like to find a doctor in our area ( San Antonio, Texas) that really knows RSD. I called RSDSA for a referal but the closest they could give me was Houston. She has great doctors but sometimes I feel like her treatment is sometimes a quessing game.
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Comments
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Sun, Nov 04 2007
Moderator note: although this forum does not allow the posting of e-mail ... there is a chat feature on the healthchannels toolbar. Download our free ...Read
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Sun, Nov 04 2007
Hi,
my name is Quyen and i'm a student from the Occupational Therapy Department of San Jose State University in San Jose, California. I'm looking for ...Read
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Sat, Nov 03 2007
Hi Penny
My now 17 year old daughter also has RSD/CRPS in her left leg since surgery in Nov 2005. She wasn't diagnosed until August 2006. It was in he...Read
October 2007
- A Positive Outlook - by Jane - (Wed, Oct 31 2007)
I was diagnosed with RSD last February, two months after undergoing discograms in my spine. Apparently the sympathetic nerve was bumped or nicked. The pain began in my right foot but soon migrated to the left foot and legs.
[more..]
- Ducky’s Story - by Ducky - (Mon, Oct 29 2007)
DUCKY’S STORY
My name is Ducky,
I have total body RSD, fibromyalgia, connective tissue disorder, and chronic fatigue, polyglycemia. I have internal organ involvement with the RSD, including but not limited to eyes, mouth, bladder, bowel, liver, ovary, gall bladder (since removed) all 23 teeth remaining (also removed). It is not fun but I have learned we can live with this disease and we can still do many things, the trick is to not dwell on what we cannot do but rather on the things we are still able to.
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- finding relief from rsds pain - by Susan E. - (Thu, Oct 25 2007)
I have been living with Reflex Sympathetic Dystrophy Syndrome for several years. Going in and out of hospitals for pain relief shots only for a couple hours relief. My husband was tired of seeing me in agony and feeling helpless.
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- RSD - 20 YEARS - by SABRINN - (Mon, Oct 22 2007)
I have lived with rsd for 20 years/17 diagnosed. My rsd is full body/systemic (1%) and fairly under control. My journey is fully documented (original medical records) and it is amazing at how many times it was missed. I could have been spared a lot of pain. I believe my journey can help. My case can be used as a teaching tool as well! We really do need all of the awareness raised as possible. Chronic pain is life changing. It breaks up families. It causes financial devastation. It causes depression In a small percentage of cases, even suicide. Rsd pain is rated higher on the pain scale than cancer pain. That demands immediate attention. I am willing to share my story/records/secrets to making it thru a day with anyone interested.
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- My story - by Elizabeth - (Mon, Oct 15 2007)
Two years ago this November I fell in a parking lot and caught myself with my left wrist. No big deal just sprain and a scraped up knee. Two weeks after my fall I was still in pain so I went to my doctor. We did x-rays and nothing turned up so he suggested I see an Orthopaedic specialist. After two months dealing with this doctor he told me that I needed a phsychiatrist.
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- The RSD Hopeless - by BJL - (Thu, Oct 11 2007)
In 2000, I got a flu shot for my job. I have a college education and worked for the Mental Health program in our county for years. Immediately following the flu shot, I had the worst case of the flu I ever had. Within two days I could not raise my right arm. My scapula winged and I had horrible pain the shoulder and scapula area near the spine.
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- My 17 year old daughter has RSD - by Penny - (Mon, Oct 08 2007)
My daughter was diagnosed with RSD in April 2006. She feel on her knee and had a small scratch. Within 2 days her leg was extremely swollen, shiny and even the slightest touch was painful. To make a long story short within 2 weeks the leg was so bad she was in a wheelchair.
[more..]
- Low-dose Ketamine, it worked for me! - by Keith - (Sun, Oct 07 2007)
I was fortunate to have been one of the first few patients to have this treatment back in early 2003. Back then there was only one Doctor in this country doing the ketamine procedure, Doctor H who is down in Hot Springs, Arkansas now. I was the sixth patient in the country to get it and received about 85% pain relief.
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- My daughters RSD, facial & TMJ - by Julia - (Tue, Oct 02 2007)
Jess is 23yrs. old and has had RSD for 4 1/2 yrs. She had TMJ sx. in 2003 in both joints. Three months after her sx. a lady broadsided her and the air bag hit her in the joint and ruined her sx.
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