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, 11:16 AM #1
Summertime Summertime is offline
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Default New to site and RSD

Hi

I'm new to this site. I've been diagnosed with RSD due to nerves being damaged from a previous surgery.

How do you all deal with this pain?
I feel like I'm going out of my mind most of the time with the pain, burning, needles, etc..

Any help would be appreciated. I feel like I am at the end of my rope.

Thanks for listening
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Old 07-08-2008, 11:53 AM #2
daniella daniella is offline
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Hi. I am sorry but understand. What types of treatments have you tried? I encourage you to find a good pain doctor because it is key to get this under control as soon as possible. I have been dealing with this for 1 year and half and have not had adequate pain control through meds or other less invasive treatment so am going to probably get a scs and the 2nd consult is tomorrow for that. I often feel like I am loosing my mind but I try to use the support I have who help me stay present and keep me motivated to go to more doctors. Hang in there and you are not alone mthough I know it can feel that way.
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Summertime (07-08-2008)
Old 07-08-2008, 12:57 PM #3
fire fire is offline
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Quote:
Originally Posted by Summertime View Post
Hi

I'm new to this site. I've been diagnosed with RSD due to nerves being damaged from a previous surgery.

How do you all deal with this pain?
I feel like I'm going out of my mind most of the time with the pain, burning, needles, etc..

Any help would be appreciated. I feel like I am at the end of my rope.

Thanks for listening
Hi Summer time I am new here to trying to find my way around. The pain is terrible its the worst burning pain i have ever felt. So depressed i cant deal with the flare ups. Where is your pain?
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Summertime (07-09-2008)
Old 07-08-2008, 06:12 PM #4
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 #5
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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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Old 07-09-2008, 12:33 AM #6
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 #7
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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