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This page is dedicated to our daughter
Debbie, and her unending battle
with the disease.
Reflex Sympathetic
Dystrophy; or RSD I have had to divide it
into 3 separate pages; as it grows all the time
with information. My hope is that if you
also have *RSD* or know anyone who has it,
that you and they will gain an insight into
*RSD*. I thank you for visiting.
Barb (GrannyGrace)
A
new study on Neuropathic Pain
Here is another article
taken from the RSDigest that also may be of help:
Subject:
RSD....LEARNING TO MANAGE CHRONIC PAIN
Good evening everyone
I have noticed that in the past few weeks a number of people are having a particularly difficult time with how RSD is affecting their lives.
Unfortunately we are pretty much stuck with the little brat of a disorder so I decided to dig out an article I have posted in the past in
the hopes it might help someone. This particular article was not written by me but by a chronic pain patient from the Chronic Pain Outreach of
Greater St. Louis
LEARNING TO MANAGE CHRONIC PAIN
Taken from the Chronicles of the Chronic Pain Outreach of Greater St.
Louis
ON ISOLATION.
Isolation seems to strike the chronic pain
person in two ways. First is the feeling that I'm alone in a world of disco dancers, jocks and
joggers, all in complete command of their healthy bodies. No one else seems to comprehend the straight jacket I live inside. And although no
one has ever said it, I often feel they are wondering if it could really be that bad. Many times I've been tempted to draw circles under my eyes
just to prove that it is. Finally, I stopped expecting others to
understand. Indeed how could they when it took years of living in pain to understand it myself? Instead, I took the more realistic view that
they would never totally understand but that at least I could help them learn somewhat by association.
When my attitude changed, the isolation I felt no longer seemed as great. And, of course, a support
group is invaluable for dealing with this type of isolation. There just is nothing to compare to the
mutual understanding of kindred spirits.
Second is the physical isolation caused by reduced activity, and it is equally difficult to cope with. Simply making an effort to actively
think of friends throughout the day helps. News programs and magazines keep me in touch with things going on around me. And library books
expand my bedroom to include the whole world and beyond. And both keep
telephone conversations with friends (a real life-line for me) fresh and stimulating for both parties.
Letter writing is an effective way to keep in touch with others. Oh, not the "Sue is going to summer
camp" variety that just scratches the surface of living. But, the kind
that contains depth of feelings and thoughts or descriptions. They require more practice, but can be
ever so much more rewarding.
Letters to people one admires can often be the beginning of a new relationship.
Short cheery notes to friends right in the same town as myself are just as much fun to send as they
are to receive. Everyone enjoys getting personal mail, even so-called healthy friends (they have bad
days, too). If I've seen or heard something I particularly liked, I write a note and let the person
know it. Like bread cast upon the waters, the more I reach out, the more I receive, sometimes in
very unexpected and truly wonderful ways.
ON GUILT.
Dealing with guilt was one of the hardest
adjustments to make
because it involved complex interactions between myself and others. I saw myself as the
roles I had always played. When I could no longer play my part in these roles, I felt I was a failure.
My health ran up countless bills. I could no longer do what others had come to expect of me. Super
Mom, who kept a clean house, clean clothes in the closets, cookies in the oven, who could get
one kid to soccer practice, another to the dentist and balanced hot meals on the table was replaced
with a
seemingly helpless stranger. I felt like apologizing for my existence every time I took a
breath.
There was no question that others would have to take up some of the slack and that some things would just have to remain undone. But I COULD exchange favors
for those who helped me out. For the first time, I had plenty of hours to think, and I could
give my family and friends the benefit of those thoughts. I had the time to really pray for them.
I could also teach my family by example how to live with challenges. I could show them what patience
and a positive attitude could do. And who's to say which way of giving will be
the most beneficial to them in years to come. There are many ways to give. I'm limited only if my mind remains stuck in the roles I can no longer play.
ON ACCEPTANCE.
For years, I felt that acknowledging my pain as
a chronic, possibly life-long, condition would have been the same as admitting defeat. Anger
and fear were constant companions as I frantically looked for a cure. But they were familiar
companions. Giving up held an unknown horror somewhat like falling down a black hole in which I'd be
confined forever. I was less prepared to face that.
Slowly, but irrevocably, it dawned on me that accepting my situation and giving up were as
different as day and night. Giving up, I realized, was crawling off into a corner,
broken and defeated. Acceptance, on the other hand, was making the best out of a bad situation. It was living constructively, using the tools I
still had left to work with to the best of my ability. It was giving up the destructive attitudes of fear and anger that came with my
pain. But it was not giving up hope.
Hope was keeping abreast of information pertaining to my problem. It was living each day with thankfulness. The dreaded black abyss never appeared when I accepted
my situation. Instead, I felt the freedom for the first time in years to live with joy, hope
and a renewed sense of life.
So what is RSD?...
The best way to explain it is to ask
you a question. Have you ever gotten a burn to your hand, or finger? Remember how
excruciating the pain was? Well, in RSD, that pain can reach pain levels 100 times
greater!!! And it does NOT go away. An RSD patient
lives with this type of pain 24 hours, 7 days a week!
Every RSD patient that I
have ever talked to has said it feels as if someone is holding a hot iron to the
affected area. It is also known as
an "orphan" disease, because
there is so little research being done on it. (This statement has
changed to some degree, as the Mayo Clinic in Rochester, Minnesota now
has an RSD Clinic that is also connected to their pain Clinic.) There are very few
knowledgeable medical professionals in this field. We are making inroads with
the general public, but we have a long way to go.
It is a disease that has
been around a very long time (first diagnosed by the Civil War surgeon from
Atlanta, Ga.--Dr. S.W. Mitchell) and to date there are an estimated 5
million people in the United States alone who suffer from this extremely painful and
disabling disease. It brings about constant burning pain, accompanied by severe
anxiety, depression, muscle spasms, insomnia, agitation, cold extremities, flexion, weakness
and atrophy of the muscles. Some treatments include nerve blocks, epidural spine
stimulators, and intrathecal infusion pumps. There is a long list of drug therapies for
it and each patient responds differently. As one person stated...." Not all
treatments work the same for all people." There are so few
Medical Professionals who are expert in this field that patients sometimes have to
travel long distances to find someone that can be of help.
If you ever have the
horrible misfortune of contracting this disease, I hope you will have better luck than our
daughter has had. There are support groups and avenues of information; which I have listed
below.
There are
some research programs going on across the country, one program is in Rochester,
MN. at
the Mayo Clinic. This is where our daughter went, among numerous others.
The worst part about
the disease, is finding qualified doctors who even know about it and know how to treat it.
Most of them want to send you to a *shrink* because they say it is all in your head! And
to look at an RSD patient, one would wonder. Our daughter for instance shows no outward
signs of having anything wrong with her.
But she has gone
from a $40,000 per year supervisor at the foundry where she was injured to being (at last
evaluation) 100% disabled! She is only 44 yrs. old; a wife, mother of 3 and grandmother of
3. She is a full-time Girl Scout leader and was
on a bowling league. Now she is barely able to clean her own house! She has times that the
pain gets so bad that the only way to relieve it is by taking a morphine derivative pain
medicine.
She was injured at
work where she ran a lathe to check the quality of the iron after it was poured to make
sure it met the correct standards. The lathe had a defective foot brake and the only way
to get it to engage was to stomp it. This is what she did; thinking she had broken her
foot we took her to the ER and x-rays showed no break. It has progressed from that to
about 30 doctors, numerous surgeries to remove the sympathetic nerves from her legs, to
morphine pumps to try to control the pain.... And on, and on....
Anyone can have it
happen to them from as simple an injury as a *paper cut* to a heart attack. One young lady
of 13 yrs. contracted it after turning her ankle in a school basketball game. Another lady
fell in a dept. store parking lot. Another guy injured his hand while fishing!!! Today all
the ones I've mentioned are from 75% to 100% disabled with no cure in sight. And no one
knows what causes it.
Current Update on
the progression of Debbie's illness:
I thought I would
take this opportunity to give you and update on my daughters' continuing fight with this
horrible disease: In the 10 years since she contracted this disease she has progressed to
*Full Body* RSD. It has gotten so bad that she was in a wheelchair and starting to
lose the use of her arms. The drs. think that now it is beginning to affect her eyesight
too. Her pain level has escalated to the point that she is now on a Morphine
pump. She entered the hospital to have a spinal pump
implanted into her spinal cavity hooked to a pump implanted under her skin
in her abdomen that
delivers Morphine and Bubivacaine to her nerve endings twenty four hours a day.
She is now on her 2nd pump and will probably have to have either/or the
pump or battery replaced next year. We are glad
to say that this has done the trick for her at the present time. The pump has a
concentrated mixture of the pain meds and has to be refilled every six
weeks by
a nurse. Needless to say we are all
praying that the pump will keep working for her. The doctors have ruled her 100%
disabled now and this has really taken a toll on her as far as depression etc. It is
awfully hard for her to admit that she has reached this stage in her disease. I will say
that RSD Hope has been
very good at trying to get media attention for RSD. But so far it has been a very slow
process. We all keep praying and hoping that more research will discover the cause and
cure for this devastating disease. Prayers to the Good Lord are all that we have sometimes
and believe me, we are constantly praying; not only for Debbie but for all the men, women
and yes, Children that have this monster in their lives. So folks that is a small
synopsis on Debbie's fight. If you don't mind, please remember her and all the RSD
sufferers in your prayers and good wishes. Thanks for listening.
Debbie's Mom,
Barb
Here is a Guardian Angel
that has been presented to our daughter and her name is *Tammi*
Please visit this
page to read the poems that have meant so much to so many RSD patients and their families.
*POEMS*
There has come to my
attention a new source of relief for a number of RSD patients that I think should be added
here for further review. It seems to be working wonders for some patients and if there is
any chance at all that it might help someone I am adding the web addresses for those who
would like to check it out. It is a form of aqua therapy that was introduced by the
Japanese. All reports so far that I have received are very positive. I hope they help some
of you who are suffering. Below are four sites for the therapy, It is called
*Watsu*
Wellnessworks
Earthlink
Watsu
Watsu
Education
Hopefully the
information here will be of help to others. God Bless you all.
I have decided to
include a page just for links to the resources and information on RSD on their own page.
This will shorten the load time and give you a page to bookmark if you so desire. Please
proceed to this link for the information. Thanks and thank you again for visiting.
RSD
LINKS
Please e-mail me
at grannygrace@lsol.net if
I can be of any help or answer your questions. Thanks.
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