all you are going through cannot be available for
support, who will be? I am in awe of you, that you are
able to work at all......What type of work do you
do?<br><br>Hoping for a better tomorrow and keeping you in heart,
mind and spirit,<br>Elizabeth

Thanks Spirit_Tao, for your concern. The third
block didn't go as well as the first two. I had only 4
hours of being pain-free, with a lot of side effects
(droopy eye, no voice, sinuses closed, and I even had a
headache and nausea). I was so ill, that I couldn't make
it to my OT appointment afterwards. I also had to
miss a day of work today due to some of these
complications. <br>Tomorrow, I have my forth block and praying
for better results. Today my hand has swollen and I
have been keeping it elevated most of the day. Just
keep me in your prayers tomorrow around 12:45 PM (that
is when I get my block). Thanks Elizabeth, it is
very sweet of you to ask.<br><br>In HIS
Hands,<br>Gloria

Keeping you in mind, heart and spirit, Elizabeth<br>Ö¿Ö

It has been reported missing my friend, to the
Federal Authourities, along with mine....I really have no
objection to mine vacating without me, but when it takes
along spending money, unbeknown to me...well thats the
pits.....<br>Where am I?? Oh yes...Australia I think, can somebody
please guide me home, to the land of
Sunshine....<br>Love..and healing Titch....(I think)

This is sunshine, and I had my third Stellate
Block this afternoon. The first, I had 4 hours of being
pain-free. The second, 6 hours. Today, I am presently
without pain and counting. I am praying so hard for
remission. I had a lot of side effects today with this one
(droopy eye, cannot speak, and sinus very stopped up. But
to get some relief I must endure the side effects,
huh? I just wanted to check in with you guys before I
lay down (as my doctor said to do). Have a great
evening.<br><br>Sunshine (Gloria)

Des, it (short term memory) is probably on
holiday on a Hawaiian Island....that is where I found
mine...well most of it anyway.....<br><br>Thanks for
sharing....I am looking forward to hearing more from
you..<br><br>About the SCS story, you may tell it in pieces if you
like....sort of like serial stories ... the next chapter,
tomorrow, next week, next month, whenever....

Hello, and good morning to all.<br><br>Today is
the day that I have actually realized how bad my
short-term memory is.<br><br>I left my car door open, and my
cell phone on the roof. Of course it began to rain,
and my seats were flooded long before hubby went
outside. But, as I have learned..It could be worse, at
least my car was parked in MY driveway, and not the
local grocery store! <br> <br>I also would like to
mention the fact that our dear sweet spirit, has asked me
to tell my Spinal Cord Stimulator story to you all.
I feel that I must sit down far too long to tell it
as it should be told, so I am going to have to spend
a few days getting my thoughts in order, (not to
mention my behind..it hurts to sit for very
long)<br>Please forgive me sweet spirit, I will keep my promise
to you...unless I forget!! hee hee.

Listed below are a few of the strategies I have
used and/or use to cope with RSD....Keeping an open
mind to new and different ideas is probably the #1
method of coping with RSD...Take with you what will work
for you and leave the rest for others along the
way....<br> 1. Focus on helping others.<br> 2. Bibliothreapy
- self help books/tapes<br> 3. Set SHORT-term and
specific goals.<br> 4. Music - soft, restful and
relaxing.<br> 5. Postitive coping thoughts.<br> 6.
Spiritual/Religious beliefs<br> 7. Focus on what I CAN DO vs what I
can't.<br> 8. Journal writing (if you haven't tried it,
do).<br> 9. Modify activities - pacing activities.<br>10.
Recognize that some chanes have positive effects.<br>11.
Maintain attitude of "1 day/moment at a time".<br>12.
Avoid pain behaviors including complaining.<br>13.
Socialize - get involved w/family & friends.<br>14.
Relaxation methods - use often during a day.<br>15.
Meditation/Prayer.<br>16. Existential beliefs - learn from
suffering.<br>17. Find something to enjoy and/or appreciate.<br>18.
Remember, there are people with more severe
problems.<br>20. Allow time for self (alone time).<br>21. Allow
yourself to feel appropriate emotions.<br>22. Direct anger
at the pain.<br><br>Meditation is a great, the
greatest part of my days and nights...I first began it as
a pain control method and over time it has evolved
into a wonderfully new and insightful time in my
day.<br><br>Keeping you in mind, heart and spirit, I am your
spiritfriend, Elizabeth

to have you here....am looking forward to getting better
acquainted....<br><br>Elizabeth

Hey Ya'll,<br><br>This club is GREAT!  I feel very comfortable after only a
couple of days here.  I can hardly begin to tell you how glad I am that I found
you.  Blessings from above.<br><br>Sunshine

Sunshine, the calendar is your personal
calendar...what you post is for your eyes only...<br><br>You are
fortunate to be able to maintain your orgarnizational
skills while the monster is in residence...I found I did
not have the energy to maintain my home, papers,
reading, education, painting, etc., on the same
level...That was when I learned about "LIMITS"...of course, I
must confess it took me 6 of 7 years to learn this
lesson, but hey, I wanted to make sure it was right? lol
lollol<br><br>keeping you in heart mind and spirit, Elizabeth

Hello there Sunshinegk.......I also have RSD
right/hand arm etc......so nice to meet you....It seems we
both come from the sunny lands....I am in
Australia.....and at present the rains are blessing
us.......mmmmmmmmmmmmmm its heaven. <br>Yes the calendar is an asset isnt
it for forgetful minds...or just maybe RSD
sufferers..who seem to suffer more 'senior moments' than
others.....SMILE....Isnt that so Spirit_Tao? LOL.<br>Love..warmth and
healing<br>Titch

Hey Ya'll (yes, I'm from the south),<br><br>I
have a question about this club. Since I am new, I am
not sure about the calendar at the left. Is that my
personal calendar or does everyone in the club see it. It
is neat to have, because I am an organized person
and need tools such as that. Thanks for the info and
ya'll have a pain free
week.<br><br>Sunshine<br><br>P.S. My profile says that I am 47. Well, I must
confess that I will be 47 on July 20...close enough.

support...Knowing that each of us deals with RSD
in different manners just as we take different
and/or a combination of different medications was the
catalyst for the formation of this club....<br><br>MGH,
when I went there was a great place for
support....then for whatever reasons it became something
less....As I keep stress out of my life, as much as
possible, I found that the judgemenality, bickering and
misinformation was more than I was willing to live with in my
life.<br>Thank you sunshine....Hmmmmm..<br>Elizabeth

Hey thanks sunshine for pointing this place out
at MGH forum. Hope more from there give it a whirl.
Maybe we can finally meet up in here than hit an miss
over there....so im_cam is CAM from MGH forum. Hello
to new friends,...a bit about me...39, two
teenagers, rsd almost 10 years after an accident recently
started spreading. on going forever, never ending workers
comp case! LOL and a very blessed life. Look forward
to talking with everyone. What is a good time for
chat? Blessings CAM

I am so glad that we have each other, even if we
don't know each other. Our common bond brings us
together to share, support and find security we don't have
to go through life handling this monster
alone!!<br>{{{{{{{{{ Gentle loving hugs }}}}}}}}}<br>Carol Olges

CHILLY.....in here......have we a heater, as my little legs are all in, as I
have been running on the spot here to keep warm..Where are the
energies??<br><br>A chilly Titch....SMILE

Is an experience for me, that likens to no other.
RSD began for me, unannounced and in a way that I can
only describe as sheer Hell....Its path is continuous
and at times not at all kind. I also was without a
computer when being told that I had RSD....I was without
contact of any kind relating to RSD..In fact I now say
thankyou for this. As it gave me a strength that I would
not have noticed, had I have had a post to lean
on.<br><br>This for myself, I see this as a blessing in disguise.
I have been taken to the darkest corners of my life
with RSD...at one time going without ANY sleep for a
month, because of the terrible undescribable pain. I was
just about at the end of my road, infact I was, but
managed somehow, to see a glimpse of light, so decided to
stay. My decision at the time wasnt one that was
terribly certain, however I believe that all things happen
for a reason, so I sit here today to tell my
story.<br><br>When being diagnosed with RSD..I intially was very
unaware as to the consequences of same, I was told my
condition was not benign, and that to regain the use of my
right hand/arm was a 50%-50% chance....At this time I
was walking around with a permanent fixture which
took the shape of a JOKE hand......It is today...still
a joke, but the difference is I can laugh...and the
limb is still attached, which at one time, was
suggested that it be removed .The nights, days, months,
years, of pain, hell, despair, sadness, anger, denial,
fear, lonliness, seclusion, inadequate, searching, were
nights that I so appreciate, because those nights are a
part of me, they have taught ME about ME. I have made
some beautiful friends whom I love. I have grown
stronger in spirit thanks to RSD. I may be disabled in the
physical sense, but emotionally at times I fly....SMILE,
yes FLY......so freeeee!!!!!<br>I really like me, and
the fence where I sit is very
safe...<br>Love...warmth and healing<br>Titch

Learning to live with RSD is as varied for each
of us are there are those who are diagnosed with
RSD...<br><br>Even tho I have an education and expiential background
in medicine, I had never heard of RSD...to me
"chronic pain" was in the form of back problems...my son
had broken 3 vertebrae as a 17 y/o and the pain he
endured (still endures) was to me chronic
pain...<br><br>I knew by the paling of the doctor's face, the pain
and tears in his eyes that what he was about to tell
me was not good...<br><br>Not having a computer in
1993 I did my research by telephone, library and
asking, asking, asking....The medical material I received
as well as the material from the national clearing
house in Haddenfield NJ didn't begin to explain what I
was going to be in for...it was like comparing
"living in a concemtration camp to bad room service" This
quote comes from a site no longer online. Or, if it is
it is not under the same name...<br><br>I went
through all the crisis steps; why me, anger, hate,
denial, sad, pissed, denial...I couldn't know that this
hell would turn into a blessing.<br><br>"Be careful
what you wish for" was am admonishment I received from
my Grandmama whenever I wished for something. I had
always wished that someone would pay me to stay home and
paint...now my wish has come true.<br><br>It is a long story
how I arrived where I am today...and little by little
I reveal it all...For now, I am much interested in
your understanding of RSD when you were first
diagnosed. Also the feelings you experienced and may well
still be experiencing...

For the very informative description of this
'Monster' called RSD OR CRPS........however, it is
preferred to be said.<br><br>I for one still am unsure as
to what Stage I sit at, not that it really is a
major ordeal not knowing, however it may give me some
idea of where exactly my future
lays..........SMILE.<br><br>However I do know that I have what is called by my
Musculoskeletol Specialist........as CRPS Type 2........such a
brief description for such a complex disorder, dont you
think?<br><br>There is a site that one can obtain a Candle attached
to one's name, whereby one can have made available
similiar sufferers, penpals world wide and also very
informative material for reading.<br>The site is called
www.rsdhope.org/garden/lights.asp The candles can be viewed here and to obtain
one
for yourself attached with your name, just send an
appropriate email to Keith roomblue@... <br><br>Its
amazing how strong we can become by just joining hands in
strengths, maybe the cure isnt around the corner, but
friends sure are....we just need to expand and stretch of
arms......SMILE<br>love..warmth and healing<br>Titch

Reflex Sympathetic Dystrophy (RSD) is a disease
of the sympathetic nervous system. Usually
precipitated by an accident (broken bone, sprain, strain,
etc.), surgery, heart attack and/or stoke...there are
rare cases where no precipitated injury is
known.<br><br>The disease has been diagnoseable since the civil war
and is a close cousin to "phantom pain syndrome" (a
missing limb pains as though still there). <br><br>Until
15 years ago the protocol treatment was
amputation...it took 85 years for doc's to realize that
amputation was not the cure.<br><br>There is NO CURE. Plain
and simple. There are cases of spontanious recovery
and in most the symptoms reappear after an
undertermined time.<br><br>The disease is manifested in
complete and utter pain of every description known. A
doctor acquaintance once stated that it is
indescribable, because we do not have the words to express the
hell we live in.<br><br>There are various stages of
RSD, however, after I passed stage one and knew that a
cure was no longer available to me I had no interest
in the stages.<br><br>There are several names given
to RSD. However, in the 7 years I have lived with
RSD the intensive reseach tells me that the other
names describe like diseases precipitated by other
causes. For example, generally "RSD" caused by a surgical
procedure is called causalgia...<br><br>It is not a
surgeons doing that causes RSD...there are many theories
as to why one "all of a sudden" is struck, but no
definitive answers.<br><br>The best name for RSD, in my
opinion, is Complex Regional Pain Syndrome. There are
several disease like rsd which are a disease of the same
sympathetic nerve processes. Each is grouped under the name
of CRPS....<br><br>I have heard people say they have
it in their lungs, heart, kidneys and are going to
die. Falacy....Not that those organs cannot be
affected but no one dies from RSD. The sympathetic nervous
system is very complicated and take a student of
biology, anatomy and neurology to understand the
intricacies. Fortunately, my background and education allow me
a good understanding of these
intracacies...Fortunate for me. I am one of those people who needs to
"understand".<br><br>There are as many treatments for RSD as their are
people who have the disease...none cures or relieves the
pain completely.<br><br>My best advice is to educate
yourself regarding the various treatments, especially the
invasive ones like the SCS, narcotic pump, sympathectomy
either chemical or surgical. Do not take just a few
individuals word for it, do not accept the material you can
find saying that treatments cure. When your doctor
suggests specified treatments ask him what is the best you
can expect and what is the worst you can expect. What
you get will probably be somewhere in
between.<br><br>Also, remember all treatments have negative aspects.
There are no good answers, treatments or cure
alls...<br><br>Your experiences with RSD are greatly appreciated as
are your comments.<br><br>Remember, we each have a
right to our opinion here. We each are doing the best
we can with what we know. When we know better we
will do better.<br><br>Thanks for
listening...Elizabeth

are a sign of an opportunity which lies before
us. Those who have not endured the realities of RSD
for a great length of time are wondering what Titch
and I are talking about.....You will think; they
don't have RSD, they are crazy, they take too many
drugs and/or they are having senior moments known only
to those over the age of 55....take this in the
lightness with which it is intended...RSD is not a "light"
topic, but how we live with it, and our attitudes about
having to live with it can cause "light" moments which
are rays of sunshine in an otherwise dark presence...
There is yet another new RSD site by an acquaintance
and as soon as he sends me an invite, which he has
promised to do, I will share it with you....

I think I have felt a few briefs slight touches
on my hand, but have it held out in case anyone
would like to grasp it.....so we can start forming this
circle of love.......SMILE....'my arm is
aching'...........<br>love...warmth and healing Titch

the eloquence of simplicity.....thank you my friend......

Full of love......I sit here with a new found
serenity that I am liking very much.. Recently I was asked
to join a club in which our very BEING is the topic.
Although very drawn to this Group, I found myself holding
back. Now I know why this was so, also why it is now
TIME for me to knock on the door again. *SMILE*... As
I now have found a new awareness within, that
enables me to go in and feel comfortable there. I felt
too noisy before, it may have been the RED
cordial...*S*.<br><br><br><br><br>At various times, I have been asked how I am
able to
float above pain and the influences of
RSD..Spiritdreams has now taken me back to that thought, with her
posting of how RSD takes away so much, offering new
lifestyles that are baffling, painful, and at times the
pits. <br><br>My pain is still with me, despite my
embracing it, but I am able to accept it in a totally new
way, one other than that of misunderstanding.
<br><br>Yes my life has changed dramatically, RSD managed
that for me. When writing with a pen on paper, I can
no longer feel the flow, because it is often broken
as the pen flies across the other side of the room.
It doesnt fly on its own, I direct it there with
frustration and anger. As after 40 years of writing with a
right hand, RSD came along and decided that it was time
for me to go to Kindergarten again, to learn to
write, with my LEFT hand. RSD also decided for me that I
would learn to brush my teeth with my left hand, it
decided that I would learn to use the bathroom with my
left hand. Infact it decided for me that if I wanted
to continue in this lifetime in a functional way,
that I would master ALL things with my left hand. For
the past 6 years I have picked a coffee mug up,
cooked, eaten, held my grandaughters, and soooo much
more, with my left hand, using my right hand/arm in but
a passive role. So YES it stinks, and hurts like
hell at times. I sometimes wish that for just one day,
I could go about as I used to, but this is not the
way intended for me. So I have to re-adjust my normal
lifestyle to function in such a way, that I dont feel a
complete and utter ass. <br><br>I also have days where I
could cry non stop with the agitating pain. But there
are many, many reasons that I still stand. They are
reasons that I have found the strength to continue with a
smile on my face. These reasons have not been given to
me by way of prescription answers, but by ways that
I have searched for.<br><br>Many have said that
sufferers of sickness or whatever the support is needed
for, find it in Support Groups, and they stay lodged
there afraid to move on. As there is a safeness in
these rooms.<br><br>To a certain extent I agree, but
with one very significant difference. We do find love
in such support rooms. We also find love and
understanding, that for some reason we do not find outside
ALWAYS. Today I gave this theory some thought, and guess
that one reason is because of the enormous amount of
love and caring that flows with victims of any
tradgedy....It flows with natural disasters, flows at funerals,
births, infact any grande occassion. However in day to
day life, it doesnt flow as easily, as most are too
dependent on their daily activities of self preservation to
even start evolving with the main ingredient being
that of love and caring. <br><br>Which Season are we
in now, shall we make it 'Spring' one of new
beginnings, or perhaps Autumn one that sheds away the pains
of yesterday. Or maybe Summer where we feel so much
warmth, but not Winter as its far toooooooo COLD, things
dont flow so easily.<br><br>Hey......we did say this
way a room where we could share our innermost
thoughts of our intimate moments with RSD didnt we?
LOL.......because these are just a FEW of mine.
Thankyou.....SMILE<br>Love...warmth and healing.<br>Titch. <br><br>It has been
said

I am so happy you have found your way here. RSD
is a life altering disease which affects not just
those of us who have been diagnosed with it but our
families and friends as well. Since I was first diagnosed
in 1993, my sister has been, well shall just say,
less than sisterly. I moved to middle tennessee under
the auspicious of "..we can do so much for you if you
are close by..." HA!!! easy to say, hard to do. Until
a statement she made recently I could not get
through to her that her attitude toward me was changed.
To which she emphatically replied, "I have not
changed, you have changed". when I queried as to why she
thought I had changed she said she "have no
idea"...duh!!! go figure!!!!.<br><br>A recent trail of events
led me off the narcotics and onto less detrimental
medications. For those who do not know me, yet, I must tell
you I was taking only one pain medication and one
anti depressant....I used meditation for the greatest
control of the physical pain. I have said from day one
that I could better deal with the physical pain than I
could the emotional and mental pain...I am one of the
fortunate who has an extremely high tolerance for physical
pain and absolutely no tolerance for emotional
pain...go figure....anyway...in the short version I am
better able to use the meditation now that my head is
less foggy......there are those (my kids) who say a
foggy head is me...little do they know it is an
act...tee hee...I digress...the meditation works better not
only to control the pain but the duration of the
PainLess time is lengthened.<br><br>This is not to say
that my way is THEE way...each has to choose which is
best for them. I make no judgements about the course
that others follow. I am having a bit of a tougher
time presently as;<br><br>Mr. RSD has seen fit to hit
my left lower extemity with pains I had all but
forgotten about...and as if it weren't bad enough to have
both my feet and legs affected, it is the bottom of my
foot this time...so, I am back on the crutches and now
know and accept that I will oneday have to return to
the wheelchair. But hey, I can use my brain...I can
read...I have always been a voracious reader...reading 7 -
10 books a week and 3 or 4 at the same time....while
on the medication I read the same 3 or 4 pages over
and over and over and have an entire library to
read...Not being able to focus on reading didn't stop me
from buying the books...lol lol lol ....Well, I said
enough for now. If those of you here know the addresses
of some of the former members please let them know
where we live and our address, we surely would like to
welcome them to our new and improved (lol)
site....<br>keeping you in mind, heart and spirit, I am your
spiritfriend, Elizabeth

My friend, how you have touched my heart and
spirit...as you have many times in the past and I know you
will again in the future.<br><br>As we sit here I am
of two minds. One I embraced the anger of the pain
caused to some dear friends. By embracing I mean, I took
it out and looked at it, I identified what the anger
was about, I lived in it for a short time, I
acknowledged it and then let it go.<br><br>As children we
learn manipulation to get what we want from our
parents, friends, etc.. A desperate cry, a form of
manipulation went out across the clubs recently. Not until we
are willing to get in touch with our feelings can we
resolve issues. When someone tells me they have no anger
over having RSD it is like a warning siren to me, I
know this is NOT so...if one goes on to say I have
worked with and understand the anger and can now let it
go, so be it....You have a right to be angry. In fact
you have a right to be down right pissed. It is not
fair what has happened to you. After all, what did you
do to deserve to have your life taken away. And, it
certainly has been taken away. You can no longer perform
the tasks you once did, you can't even remember short
term thoughts, ideas or what you need to. You don't
know or understand who you are. Some one, something
stole the "you" you know. I was really pissed to. There
is no one to blame, who can we blame for twisting
our ankle and breaking a foot, or whatever the
incident was that took yourself away.<br><br>There is good
news too. We can, all of us, each of us, embrace our
feelings. Take a deep unbiased look at the feelings we try
to cover up and talk about them, one by
one.<br><br>Only by embracing the negative can we take a positive
stance. There is no other way for us to find us and get
some semblance of who we are back.

Even though over the past few days, certain
events have shattered emotions, of which I bore the
crunch with few others severely.<br>I can find it in my
heart to forgive and start afresh, and hope that others
will slowly join me.<br><br>This has been an eventful
week, but one thing still remains the same, that is the
RSD in most of us that visit here.<br><br>I have just
returned from meditation, whereby I felt and experienced
many things. I would like to share just one of these
with you. As I find there is inside, a hidden
meaning.<br><br>Whilst enjoying the warmth and love found in my
sanctuary by the ocean, the waves thrashed repetitively.
Churning over strengths with each wave.A few chosen
'special' friends joined me there. I started this
particular time of meditation with thoughts of the past few
days. Having walked along the sand enjoying the
thrashing sound of the waves and good company, before I
knew it a storm had crept in quickly from out at sea,
so we hurriedly ran along the beach to a log cabin
that offered warmth...When inside with the pootbelly
stove glowing, with the outside elements raging, I had
this thought. <br><br>No matter how cold or severe the
outside energies are, whatever negativity is around us,
if we keep love in our hearts to warm us through, we
will survive this negativity and find forgiveness.
<br><br>Some may find this rather a relentless way but to me
it was sooo clear whilst sitting in my log cabin. My
'Sanctuary' not only helps me find my way towards acceptance
of RSD, but at times it helps me put surrounding
negativity in prospectus.<br>It especially did this for me
tonight. Here in Australia it is our winter, and believe
you me, when being accustomed to sub-tropical
weather, the cold months hit home. Subsequently my RSD
hand etc. becomes very painful. But for the past hour
my RSD limb was glowing with heat
mmmmmmmmmmm.....such comfort and so was my heart, despite the storms I
was a witness to BY THE OCEAN. Also the events of the
past few days have been shattering, but with love we
can rebuild and forgiveness will heal. So I for one,
am ready to join hands and find
forgiveness.....anyone want to hold my hand?<br>Thankyou also
Spiritdreams....for reopening a place where we can
share...smile.....you are a gem...<br>Love..warmth and
healing.<br>Titch

Support which was deleted without thought of what
those who look to this site as a support
system.<br>Please accept my humble apologies. Although I was not
personally responsible for the deletion, Ifeel responsible
as I turned it over to someone whom I thought cared
more about others with this painful disease than cared
about him/herself.<br>This site will remain under my
care for as long as deemed necessary.<br>keeping you
in my heart, mind and spirit, Elizabeth

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