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personal stories and notes from our correspondents
Laura - Colorado, USA
My name is Laura King and I live in Fort Collins, Colorado. In February
1999 I went to our local hospital ER for the Flu, Dehydration and breathing
trouble and I offered the ER doctor a note regarding calling my family
doctor about my other health conditions and telling him that I am a
hard stick/IV access. The doctor refused to read my medical note and
I was stuck 20 times. In the course of one week I saw several doctors
who said I had RSD in my right foot. After 1 year of trying nerve blocks,
a range of medications and a failed trial stimulator in Colorado Springs
I went to Johns Hopkins hospital (in Baltimore, Maryland). and had another
trial stimulator - this time a 2 channel stimulator with 8 electrodes
in my back. It was SUCCESSFUL and I now play on a golf league, ski for
the disabled, do horse riding for the disabled, and a number of other
activities. Three months ago I found out that the RSD is spreading to
my hands and arms, so I went back to Johns Hopkins. I am now going to
try some nerve blocks and other medications in Fort Collins, but if
they are not successful I will be going back to Hopkins for a stimulator
in my chest for my upper extremities.
I am trying to keep a positive and optimistic attitude - BUT if ANYONE
has EVER received RSD from a needle/IV stick PLEASE contact me as I
have a LAWSUIT in process and my attorney and myself are looking for
anyone who is in this situation or has ever filed a similar lawsuit.
Apart from that, I would welcome contact from anyone who needs support
or wants to know about Johns Hopkins and a great doctor who is well
known for implants.
laura_ellen_king@msn.com
Lynn - UK
A Consultant told me two years ago by that I had Sudeck's Atrophy in my left foot. This was diagnosed six months after the original injury (a Metatarsal Fracture). The Consultant's words to me were "You will have this for approximately two years. Go home learn to live with it." I had never heard of this condition and had no reason to disbelieve him. The last two years of my life have been the worst as far as my health is concerned. I've had severe depression, skin problems, pleurisy and more recently have been having treatment for pain in my hips, back and neck which they think is Thoracic Outlet Syndrome. Yet NO one will say that it is all as a result of the RSD.
After my diagnosis I did not receive any treatment… I was left to just get on with it. I had no idea what I was up against. My own GP admitted that he had no idea what this condition was and that he did not know how to treat me. I decided I was not going to take this lying down and tried to find out as much information as possible. I got in contact with a Neurologist in America who kindly sent me lots and lots of information, this information was very good; it had information for the medical professionals and then also for laymen. (If anyone would like this info I can supply the e-mail address.)
I am now having physio three times a week and use a Transcutaneous Spinal Electroanalgesia. for pain relief. I find this very good. But - nobody will yet admit that my problems are the result of untreated RSD.
I'm glad I found this site as all the sites that I normally log onto
are American.
I am happy you found us, Lynn. True, this is not an American based site,
though we have Americans on our Support Team, together with an Australian,
a New Zealander and several Brits… We welcome everyone! Derrick
(RSD Alert Editor)
AE - USA
This is the second time I have RSD. But this time it has ruined my
life. I first had this disorder 10 years ago after I injured my a hand.
I went to doctor for 2 years trying to find out what was causing this
great unexplained pain in my arm. We traveled all over, with no assistance.
The doctor said there was nothing wrong with me. I thought that very
odd, because the pain was so intense I couldn't stand it. After meeting
this very nice doctor he told me about a new technique using injections
in the neck area. I was not so keen on this, but I had no where else
to go. Anyway, after 20 injections, the horrid pain went away and I
was able to take oral medication to keep the pain down; then it just
stopped as quickly as it started.
Well in October last year, I was involved in a traumatic motorcycle
accident at 65 mph. I survived the accident and just injured my right
arm, so I thought. My surgeon told me that I had injured my rotator
cuff and I had some fluid in it, but no surgical intervention was needed
or would help. So many months went by and I was not getting better.
The problem was that I work for a world known company and I was placed
on a temporary assignment. I was unable to do my temp job. They wouldn't
even assist me in getting my work area comfortable for me to work...
they just fired me. I went and got a second opinion from an Orthopaedic
specialist and he had ordered a EMG; believe me, when the doctor did
that my arm went south fast!
So, now I have RSD again. I am unemployed and have a disorder that no
doctors want to touch with a three foot pole. It's like living in hell.
You can't sleep at night, because the sheets irritate the skin and then
the arm starts throbbing. If anyone out there has, or knows a doctor
that treats RSD with compassion, and doesn't treat you like a drug seeker,
let me know.
The media has made the prescription drug abuse such a public item now
that people who are really in need of medications to live a normal live
don't get a chance. When you see a doctor for the first time and say
you have RSD, they automatically think you are seeking drugs.