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How CRPS(RSDS) affects me and what WE can
do to make it easier on both of us.
Although I wrote this from the 1st person and in no specific order, I think much of
this information will help loved ones to understand how to interact with someone afflicted with RSDS/CRPS.
Don’t
assume, just because I have RSD, that we can no longer hug or touch one another, Please just ask me. If my pain level is tolerable we may share
affection, be patient and allow me to show you a different way to hug me. Maybe
it’s around the waist or just on one side of me…but, please understand that sometimes the pain is to high and to be touched by the clothes I wear
or the wind that blows is about all I can handle.
As I
said before, be patient with learning how to show me affection. It’s new
for me too; please don't treat me like I’m going to break if you touch me. This seems to be one of the more difficult
things to ask of a friend or family member. For me, it’s much worse to be slightly touched than it is to have
more pressure applied.
Never
assume that just because I look good that I feel good. It is so important to me, sometimes, to present myself in an
acceptable fashion that I forget that other people assume this means I’m not in pain. Unfortunately, the opposite
is true and I am just trying to look as normal as possible.
Do you have something to add, a question or comment?
Please email me.
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What may be helpful for those with CRPS(RSDS)
We all
have days where it's hard to look at anything positively because the pain is high, the medicine is working, no one understands,
insurance turned you down again… find the one thing that you can be thankful for.
Every one has at least one thing they can be thankful for - find it, I did and it helps me get through the toughest
days.
For
a year or more, after I acquired RSD, my Occupational Therapist helped me by working to desensitize my right hand, arm, and
shoulder and taught me things I could do and at home. (petting my dog, using
sandpaper on a board, putting my hand into a container of uncooked rice, and having a family member slowly stroke my arm and unfold my fingers from the claw position) Although difficult, it was one of the most important therapies I have done thus far, as I can hold my children close once more and be able to tolerate
the pain. As always with RSD, there are exceptions to this, especially when I’m
flared up.
More ideas from friends of RSDUPWORD
Lisa, founder
& director of Life Goes On has been afflicted with RSD for over 12 years.
She said, “If an RSDer is flaring
and they sit around, the RSD has a chance to start destroying bone, muscle, more nerves, etc. I have always been told by my
RSD specialist that has been working with RSD patients for over 30 yrs., Move the area. When it is flaring in my stomach and
chest I cannot do much about that but I do get up and do yoga. I have been doing yoga for 5 yrs. I have beaten the odds. I
was told with full body RSD and as bad as I have it that I would be in a wheelchair in 5 yrs. I am far from it. I use it periodically
if we go to amusement parks etc. I walk a mile every week to get the circulation moving and this is with a broken foot and
the other having screws in it!”
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