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 02-01-2009, 07:48 PM #6
MominPainRSD MominPainRSD is offline
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Join Date: Dec 2008
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MominPainRSD MominPainRSD is offline
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Join Date: Dec 2008
Posts: 264
15 yr Member
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Oh, KayT......I so wish there WERE something that could be done. Unfortunately, it is a troublesome symptom of having RSD......it is NOT your fault, there is NOTHING you can do to prevent it, nor did you do anything to cause it, and it is important in all that you're going through to tell yourself that over and over. While I completely understand your embarrassment (and we all have our issues that draw attention to our condition......whether it be a limp, a wheelchair, a hand or arm that doesn't want to work properly, a cane, flushing, sweating, etc....), it is something you have to accept and so do the people around you. Just share with those closest to you what is going on so that when these things happen to you, they can be understanding and compassionate. If someone makes fun of you for it, consider whether or not they are the kind of person you need in your life right now.

Ali is such a wise, mature young lady for her age. She has been through so many of the same issues as you are currently experiencing. She is truly an inspiration to us all!! I encourage you to read more of her posts......I think you will find a lot of bravery and wisdom in her words. Click on her name on this thread, scroll down, and you'll find the option to be able to read more of what she's written. We have ALL learned so much from her.....and she is the same age as you!!

It is tragic that you have this disease at such a young age, but if you find acceptance in your situation, you can use so much of this wisdom as you further mature and develop your life plans!! All of us with RSD consider ourselves advocates and educators. We didn't plan on it, we couldn't have expected RSD before we got it, but it happened, and now it is our responsibility to support others and spread awareness. You, too, will find your voice in this and will be an encouragement to others!!

You can try putting cool (NOT cold) clothes on your face or neck when you feel yourself flushing, you can try changing positions or environments if possible (if you're sitting, try walking, and vice versa). Basically, you just need to learn your body and what tends to trigger these episodes. Sometimes it is just the RSD confusing your nervous system and there really is nothing you can do. I find that a really good sense of humor works WONDERS for me!!

Find your group of close friends that love you and care about you, educate them about RSD, have them read about it so they know what you're dealing with, lean on your family and your forum family!!! We're happy to get to know you and help however we can!!!

If you find something as you're reading that you'd like to ask someone specific about on this forum, you can feel free to Private Message any of us. Again, just click on our forum name, scroll down, and you'll see the option. I'm sure any one of us would be happy to help or answer any questions!!! We all learn from each other here.

Keep us posted on how you are doing!!!
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