Living with RSDS [Paperback]

It goes chapter by chapter explaining this horrible disease to
family members and the medical community.This is an illness
that not only affects the patient, but their marriage, relationships, children, and their caretaker.No matter what
your situation, it affects your whole life.
It gives examples of personal stories of people's lives that
have changed forever.Although all stories and lives differ,
all complain of pain in the upper or lower limbs.
The Hallmark symtom is PAIN, unrelenting PAIN.
Most of these victims turn up in the E.R., where if you are
fortunate one or two professionals have heard of RSD and
will medicate you and refer you to a pain clinic.
Usually, patients are given medicine and told not to bother
the E.R. staff with a chronic illness.Unrelenting PAIN is
Hell on Earth.The suicide rate for this disorder is 20%.
Although women have the highest rate of illness-it can
strike men and even chidren.
People are sick and in pain but because so little has been
written of this disorder, they must fight to get S.S.D
or help of any kind.
RSD( reflex sympathetic dystrophy)is a neurological disease
the way Multiple Scerlosis is also neurological.
We also know very little of coping. Coping has been defined as the ability to deal with a situation.Trying to cope with pain,suffering,and disability creates emotional distress-the daily life of a person with RSDS.
Fortunately, the internet is bring patients closer and people are demanding attention and a cure... This book reminds you not to become your disease.If you
are in great pain, you will become angry at that statement.
If you are being treated and have some good days, I agree.
If you find friends on the net you can exchange ideas.
Also,you can build a friedship of similiar interests, books, movies,sports, recipes,decorating,etc. that take your mind off pain and validate you as a person.
There were some palliative measures not mentioned that
disappointed me.Patients are now recomended to have
aquatherapy in a heated pool. It is easier on the body and
more beneficial to a damaged part.There are many new drugs
and research not mentioned that show promise.
I agree with Keith, sympathectomies are usually not done because the ganglion of nerves grows back after giving a person
relief for 12 to 18 months.When the nerves grow back they
are angry and more painful.The disease process may also
spread to other parts of the body.
On the whole, this book gives some comfort issues at the
back-although I question the one of putting clothes in a
freezer, because ice does so much damage, but maybe it is
a special case. Keeping a pillow with you is almost a
necessity.
There is a good chapter on isolation. In the beginning
everyone tends to isolate,because of the pain.
Music in Church makes you hurt,large groups of people and
noise all cause more pain, so you gradually eliminate
your favorite places and people.
Later,if you have some control of pain or do better at
different times of day, do become active.If you can only distribute fliers or put up posters for RSD-let that be your
contribution. A little charity work goes a long way.Send a
card. Let someone know you think of them. Some people are too overwhelmed just getting through the day but you can let them know you care. Space yourself and your time and you will
find you can enjoy life more.
Share this book with your family and they will understand
that people with RSD can sometimes spend time with you
and other times cannot.They will feel less rejected.

I found the book to be a good beginner's giude to RSDS/CRPS.

The basic information on the disease and symptoms is put together in an easy to read and understand format.

I was hoping for more in the Treatment area. Specifically inclusion of some of the new drugs and treatments being tested today. Some of the information here is out of date, specifically the information on the use of sympathectomies as a viable treatment option for RSD patients.

One thing that was mentioned here concerning them that is important to note, is that the Drs. who perform sympathectomies consider them a "success" if they last only one year.

Most patient's are not told this before the treatment, nor are they told that this treatment can result in a spread and worsening of the disease. Consequently most of the top RSD Drs. in the country have stopped this procedure.

Overall I would recommend this book for those patients and family members who need to be educated about this disease but they need to remember that there is much more hope out there now for RSD patients.

There are a lot of treatments just beginning with successful results, so please supplement your education with the reading of some of the RSD websites on the net.

Having RSD is a life-altering disease for the patient AND their families but it is not an end, just a change. This change can be dealt with, with the support of your loved ones and your and their education of exactly what you are facing. Never give up hope!

I give the book 3 stars.

Sincerely,
Keith Orsini
American RSDHope Group

Little has been written about RSD until now for the common man. In the year 2003, this mystery disease goes undisgnosised in the vast majority of cases until it is too late. The patient is at the mercy of a complex disease. Like in my case, a minor injury caused nerves of misfire, sending constant pain signals to the brain. Whole body pain rules my body. This book is a common sense, what can I do now with this disability. How can my family help me gather my wits when the pain reaches the highest levels known to the medical profession. Living with RSD offers insightful information that helps the patient and the family live with this complex debillating illness. Living with RSD is a MUST read for persons with RSD, their families and the medical profession, who until now has been ill-equiped to communicate useful "day to day" living knowledge to the patient.

Wilson Hulley
Chevy Chase, MD 20815

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