Living with RSD

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why
by: dayle on Fri, Oct 09 2009

my name is dayle-always a very active on the go person. nothing could stop me. even being sick, surgeries, etc. in my life….couldn’t keep me down. until one day totally changed my entire life. i was told i had RSD type II…severe nerve injury, atrophy of my rt. arm…and bones that just wouldn’t heal. the pain was so excruciating and i went through so many surgeries trying to improve my condition. but nothing did. this time…i could not overcome this horrible condition.

i ended up having bone grafts, plates, stimulators, nerve blocks…name it…i had it. but nothing worked. i just got worse and worse. i even had a stim put in my neck that caused immense problems and had to have a laminectomy of C1 and C2 to remove it. now, there’s even more pain….for no reason, it shouldn’t have been done. on top of the rest of my pain, now i have constant head and neck pain. some days i wish the LORD would just take me. yes, i become depressed, being as active as i was, now, overdoing one day that i might feel a little better and then i am DOWN for days.

try to explain that to people who don’t understand. you’d think people who knew you, knew you never stopped going your whole life, then you just cannot do the things you did before….would understand that something is really wrong. you hear all kinds of stupid suggestions. sometimes i’d like to give them 15 minutes of my worst pain, to see their reaction….then tell them try and go about their day.

i never would have thought in a million years i could possibly have ended up this way. i was a nurse, something i waited until my kids were grown up enough that i could go back to school. i took care of everything, the house, school, animals, family, cooking, everything….and nothing kept me down. now, forget it. i can’t even make plans for a certain day, because i have no idea how i will feel. then you hear, well, take it easy the day before so you can go. it just doesn’t work that way.

RSD has a mind of its own. you never know from hour to hour how you’ll feel. it really is a terrible thing to go through and although doctors and nurses seem to know a little more about it now, it is something that most people never heard of. we have to get it out there, do more research…so many of us are afflicted with this horrible disease. why…when supposedly it was described hundreds of years ago, just the name has changed throughout the years, is it so unheard of? that is one of the things that hurts the most. you’ll hear of MS, lupus, fibromyalgia, etc…..but not about RSD. people need to know how we feel too. our lives are forever changed. we don’t want pity, we want understanding…and that will never happen until this disease is out in the open and more people hear of it. then maybe more research will be done to try and help us. until then, we just pray for a good day, although you forget what it is like to feel good.

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October 2009

Shanna’s Days - by Shanna - (Thu, Oct 29 2009)
It is so hard to remember that there was a time when my life was normal? 3 years ago I had to have back surgery I had exhausted all other alternatives.The surgery went well& I was released 24 hrs later only to be rushed to the hospital 5 days later with an impacted bowel. [more..]
Lucky/early diagnosis - by Lori - (Wed, Oct 21 2009)
May 31,2009 I broke my ankle. The pain was immediate but the diagnosis was slow coming. My Physical Therapist on my firs visit, identified the RSD he understood the urgent need for early neurological assistance. He saved my life! From my ankle up to my knee the skin was shiny and hyper sensitive. I could no wear long pants, socks, I could not even wear the boot/cast, I was supposed to wear. I was not sleeping because I could not lay my leg on the bed. [more..]
they think its RSD - by JG - (Fri, Oct 16 2009)
A year ago when I went to walk I had pain on the outer edge of my ankle but after “walking it out” it would go away. In June it started throbbing and not going away. I went to the hospital and they put my ankle in a brace and told me to ice it. [more..]
New at this-RSD - by Carmen - (Tue, Oct 13 2009)
I broke my heel in May 09. I never seemed to be making much progress. I had (still have ) numbness on the left side of the left foot. [more..]
why - by dayle - (Fri, Oct 09 2009)
my name is dayle-always a very active on the go person. nothing could stop me. even being sick, surgeries, etc. in my life….couldn’t keep me down. until one day totally changed my entire life. i was told i had RSD type II…severe nerve injury, [more..]
CPRS Type II - by Anthony - (Thu, Oct 08 2009)
I was injured on thr job in 1986 using a weedeater. I had carpal tunnel release in 87 and had burning pain for 3 years. [more..]
RSD or Chronic Regionial Pain Snydrome - by Beverly (BEV) - (Wed, Oct 07 2009)
I am a 43 yrs old female and 7 months ago, I was injured while driving a School bus with kids aboard, when a Deer Ran out in front of my Bus Causing my left arm (elbow) to hit the Heating Panel I have lost all 3 of my jobs [more..]
RSD - by Linda - (Mon, Oct 05 2009)
I had a fracture on the side of my foot, wore a boot cast walker and almost immediately experienced more pain. My doctor put a hard cast on my foot/leg for 6 weeks, but the pain only increased. He took off the cast, my foot up to my knee was red, swollen and very shiny, and oh so painful, couldn’t even touch it. [more..]
SADIE’S SUFFERING - by Laura - (Mon, Oct 05 2009)
My daughter was just diagnosed with RSD. She is only 10 years old. I’m having a difficult time trying to help her with her pain. She goes to a school that does not have an elevator and only has stairs. Her classroom is [more..]
dont know for sure ???? - by penney - (Fri, Oct 02 2009)
Hi my name is Penney I had foot surgery on Aug. 10th. My foot stayed swelled, I had burning pain in my big toe and 2nd toe, also felt like needles were being stuck through the top of my toes, I assumed it was because of nerves being messed with during the surgery, I wear a [more..]
Living in fear - by Brit - (Thu, Oct 01 2009)
My name is Brit and I’ve been diagnosed with RSD for over a year and a half. I went to Dr. Sherry’s program in Phily. It really helped, but I still get attacks and it recently just spread from my arm and back to my leg. [more..]
rsd/cprs type II - by Dawn from Michigan - (Thu, Oct 01 2009)
1997 was injured at work. 2000 I had to have surgery on my right arm, medial epicondilis ulnar nerve transplant. Took 6 months before I returned to work, unfortunately my employer would not [more..]

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