www.rsdalert.co.uk
Warning and encouraging
If you have a story to tell, send it in for publication...
For correspondence help or general information click...
personal stories and notes from our correspondents
Nikki - USA
My name is Nikki. I finally found out yesterday the true name of my condition, although my pain management doctor had already called it RSD Symptoms for about 2 yrs. I had a nerve conduction test done on the lower half of my body and the neurologist confirmed that it is RSD. I've had this since a spinal surgery in July of 2001. I awoke from surgery with a numb left leg at first, to which the Dr. performing the surgery said it would go away in 2-6 wks. That never happened. Instead of the normal feeling coming back, the leg came always feels numb but is excrutiating to the touch. My cat can't rub against me like cats like to do. Even my clothing, bed sheets, the wind, you name it, it all affects it. My left leg is on fire 24/7. I relate it to feeling like HOT COFFEE spilling down my leg all the time. The sharp shooting pains don't help either. The Dr's have tried many different nerve blocks, trigger point injections, medications. Nothing seems to help
too much or for too long of a period. As I sit here reading stories
from other patients with RSD, I can so relate. My family and friends
at times don't understand and it is so incredibly hard for some people
to understand what you mean when you say..."It feels numb, but
it hurts & burns so badly".
I now have a DCS ~ Dorsal Column Stimulator ~ that helps. It does not
take away the pain but only puts a MASK over it. And that helps to a
point. The medication helps as well. I don't sleep well at all. I wake
all hours of the night with fierce leg cramps. I finally found a way
to somewhat keep the sheets and blankets from hurting my leg so severely.
I have a small (very stiff) pillow that I place along the side of my
leg when I lay down to keep the sheets & blankets from touching
me. It works ok for now along with the medications so I can get some
sleep.
I am glad that I found this site. It was the first one I came upon.
Your right, I hardly feel alone here.
Sandy - USA
I have RSD. I had a work accident in Nov.2003.I fractured my wrist
and elbow and had 4 casts in 6 weeks. It never healed so I got a second
opinion and I was diagnosed with RSD in Feb 2004. I have had the blocks
done, which didn't help at all, so I went to another Dr. who wanted
to try blocks again, but in my spine. I am tired of not being able to
do the simplest things. The RSD is from my fingertips to my shoulder.
I am still out of work since November and still on workers comp and
long-term disability. I just filed for SSD. Physical Therapy is killing
me. The pain is even worse. I would not wish this horrible disease on
my worst enemy. I am concerned about the spread of RSD. How fast does
it spread?
Lori - USA
I was in a car manual car wash and the wand or sprayer sprung a leak
and took the skin off the palm of my hand. The pressure of the water
pressed the water and the degreaser in to my palm.
The doctors diagnosed carpal tunnel/ neuropathy. 11 months later after
the accident I was diagnosed with RSD. I have since traveled the internet
to look for all the information I can get my hands on. This is really
a life altering disorder. Good luck to all who suffer, you are not alone!
Laura H - Colorado, USA
Since an accident in Steamboat Springs, Colorado, approximately five years ago, I have had extreme pain in my back, hands, arms, and feet. It started after I bent forward during stretching exercises prior to the first day of a five day golf school. While doing those exercises, I heard a significant pop in my lower back. Since I did not have substantial pain following the warm up that morning I continued that full day of class. However, by the next morning, I had tremendous problems getting out of bed. Even though I had a significant amount of pain that morning, I tried to continue with the golf school the next day. After approximately a half-hour I had to stop, due to the intense back pain. I then went to the emergency room at the hospital in Steamboat Springs, where I was admitted and placed on an IV drip with morphine for the pain. I spent the last three days of our vacation in that hospital.
Since then I have had several problems in getting medical care; including; treated like a drug seeking person, being refused any treatment and totally ridiculed because my symptoms did not fit into any specific diagnosis. Further I have not been able to work at all because of my intense pain. Most days I have about two hours a day without overwhelming pain. I have also been to over five healthcare providers to get relief from my pain. My back can be so painful that at times I have been unable to wear anything because of the "burning" pain.
Finally, I am writing this letter to see if there are others with this amount of pain? And is there anyone that would treat me with kindness and compassion? Thank you for taking the time to read this letter.