Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 07-08-2008, 06:12 PM #1
Summertime Summertime is offline
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Hi and thanks for the replies

I've been dealing with it for over a year and half as well but I didn't know what was until my last doctor mentioned it.
Anytime the flare is acting up...even the touch of clothing or water on my skin makes me nuts.
Mine is from the hip down to my thigh. I had 3 main nerves damaged in that area.
The pain is there a lot but when the burning, stinging start up forget I want to scream.
I've put ice on it to help the burning sensation. I tried numbing patches, pain medication. I am allergic to many medication so it makes it difficult to treat me for anything not just this.

There's not a lot of information on this which is unfortunate for everyone who suffers from it.
I've been searching online for some time and today I came across this site.
It's good to be able to talk with others who are in this same situation, not that I wish anyone had to suffer like this.
Well take care and thanks again.
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Old 07-08-2008, 07:20 PM #2
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moey1997 moey1997 is offline
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moey1997 moey1997 is offline
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Hey there,
Welcome to this awesome support group ! I know what your going thru s well. I have had RSD for many years on my entire left side. Began from damage to nerve in left ankle related to surgery. It spread to my wrist when I had carpal tunnel surgery. So i feel your pain. First and most importantly Get a good pain doc. One that you trust and listens to your concerns and offers suggestions to treat your individual needs that you can live with ! Dont settle or think your not worthy of good care. That is so worng ! Also you dont ever want to put Ice on an RSD limb as it can cause it to spread. There are allot of very good RSD sites on the web with excellent info. Look on this site as well. There are some links to good sites that others have suggested. Most of all surround yourself with friends and family that are supportive and be good to yourself. Dont be hard on yourself. Its easy enough to do with this horrible monstor of a disease. Bless you my friend. I wish you peace and comfort ahead.....


Sincerely,
Kimberly
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Summertime (07-09-2008)
Old 07-09-2008, 12:33 AM #3
Imahotep Imahotep is offline
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Try to find someone who'll treat it aggressively. After a while the chances of a remission decrease and you'll have to learn to live with it.

There are lots of medications that are very helpful. For most people pain medications are not extremely effective and it is claimed that the pain isn't hurting you or worsening the condition. I'm not sure I believe it. Be sure you have doctors who are familiar with this condition. There are a lot out there who are not.

There are medications that will help with the pain but, for me, they mostly aren't pain killers.
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Summertime (07-09-2008)
Old 07-11-2008, 08:30 AM #4
Summertime Summertime is offline
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I didn't know Ice can make RSD worse. I see a pain management doctor. Currently I take pain pills and numbing patches (which don't work that great) but I was wondering what else is available to take for this miserable pain.
I have difficulty walking. I also am allergic to a lot of medications.
But anyone with any ideas I am open to hear them all. I am desperate for relief.
Thanks a bunch.
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