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
Kristy - Michigan
My name is Kristy, I'm a 30 year old mother of 2 and I live in Michigan. I have RSD in my right hand (which is in a claw) forearm and back. I would also like to give an update on my story...
I saw the neurologist in Oct 2001. He informed me that I exhibited signs of possible spread to my right foot and the right side of my face, but that it was too soon to say for sure if it had spread. It was a 4 hr long evaluation that left me feeling extremely hopeless. He said to file for SSD because I would never lead a productive life again. He labeled me "permanently disabled". I saw a neurosurgeon in Nov of 2001 who told me that I had two choices. I needed either a spinal cord stimulator or a morphine pump to open my hand immediately before gangrene set in, and sent me to a pain management clinic for treatment. The pain management doctors opted to try a cervical epidural catheter first. This was inserted into the back of my neck and down into the dural area. The catheter would provide a continuous flow of lidocaine and steroids for threeweeks. The first week was wonderful, I had no RSD pain at all, the second week my whole left side started going numb and I was having burning pain in my back. three days before my three weeks were up I begged the doctors to pull the catheter due to the intense pain in my back and the increased numbness that had spread to include my face and head. The RSD had spread to my back. I saw a bone specialist in December of 2001 who did a five hour infusion to help stop the bone loss and hopefully ease some of the pain. I will return every four months for another infusion. I won't know until then if it helped with the bone loss but it didn't do anything for the pain. I am currently on the waiting list for the spinal cord stimulator trial and will keep you updated on how it turns out.
Daphne - Pinner, Middlesex, UK
In 1991 I had a knee operation and, after the op, my left hand became
very swollen. I left the hospital after 24 hours on crutches and with
my left arm in a sling. Told by the hospital that the drug used to knock
me out was 'bad', I was prescribed pain killers, but the pain got worse.
They told me that the pain would decrease over a period of time, but
it didn't. In 1992 I had a scan on my left hand and was told that there
was nothing wrong, that it was my imagination and perhaps I should have
a steroid injection. The pain got so bad that I was constantly pill
popping until, in 1999, I was referred to an Arthritis Specialist who,
after various tests and x-rays, referred me to the Pain Clinic. The
doctor examined my hand which had turned to a grey/red colour; it was
cold to the touch and at times I was unable to pick up or hold things
in my hand, which just seemed to go dead. The doctor told me that I
had RSD due to a banned substance produced in USA and used by Private
Hospitals. So far I have had about 14 Pain Blocks which have helped
for a while. About 6 months ago I noticed that I was getting the same
symptoms on my right hand. I have been unable to work for the last 21
months, due to a number of other illnesses, Diabetes, Arthritis, Angina,
Asthma, high blood pressure, poor eye sight and am waiting for a knee
replacement, but I have been told that I am too young at the moment
and have been suspended by the consultant, because I refused a steroid
injection for my knee. I was then referred for physiotherapy, hydrotherapy
and acupuncture, none of which seems to have helped. Only the pain blocks
give a short respite from pain. The pain in my hand and wrist has now
started to travel to my upper arm. I wonder what the outcome will be?
Such a broad range of ailments can rarely be blamed
directly on RSD, though this condition can lead to unexpected complications.
Many problems arise from drug combinations, from inappropriate treatments
(due to faulty diagnoses) or from lack of use of the affected limb(s).
Derrick (RSD Alert Editor)