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 04-25-2010, 05:35 PM #1
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Originally Posted by Lisa in Ohio View Post
Hi all! Just a little question. I went to church today and was having a high pain level day. While I was there, I had three very sweet and caring friends pat me lovingly on the shoulder and back. Needless to say, I was really singing AMEN. How do you all deal with people touching you in public or going somewhere that there is "people congestion"? I really hate to have to give up church too, it seems like I have already given up so much, but I just can hardly stand to be touched by anyone. Any help would be appreciated, I do not want to offend people, and I know that the people at church really care about me. Thanks, Lisa
I hope I can help you out Lisa...I know at my church the very first pew is larger..more space in front of you and back..AND it is auto serve as you never have to leave your seat for communion...Possibly you would be more protected sitting there.it's actually a handy cap sitting area..I scout those down everywhere I go...

How did I do..Sorry for your awkward moments today... Bless you!

Hugz, Kathy
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Old 04-27-2010, 08:41 AM #2
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Oh, I have the same problem. My RSD is my left hand and arm. I feel bad pulling away as many don't know or understand. I don't even understand. How do I explain to them? I feel like I need to walk around with a "do not touch" sign. I am involved with a 4H group with my kids and the kids are more cautious of my left side than parents are. Many days I have a nice, comfy mitten or glove on my hand if it's cold. The kids again, are great but parents just don't get it. When I had a cast on my arm they understood and were helpful and great. I have tried to maintain as normal a life for my husband and kids but when a party or night out with friends comes up i am so nervous.

I will say that I have recently been using a tens unit. At first I didn't like it but now I love it. It comes with a glove that my Dr thinks would really help but I cannot tolerate the feel of it. Anyway, if I am going out somewhere that makes me nervous I use the tens before and bring it with me so if I can sneak away I will use it. If only it were wireless. I also have a compound gel that helps on really sensitive days.
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Kakimbo (05-28-2010), Lisa in Ohio (04-27-2010)
Old 04-27-2010, 09:10 AM #3
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Default Hi Lisa,

I bet we all deal with what you are talking about. My Grandson's hug me softer then most people and boy do I live around huggers. I didn't grow up with hugs even though there were 10 of us kids. Mom and Dad did good to keep us with us so they didn't have time for the hugs. i was also abused as a child so hugging was not something I wanted. After councelling and a hugging Dr. and best friend, they have taught me to let people hug but like you I dread it. I can't even stand to touch myself. I don't have the answer though, I kind of cringe and they do know my problem. You just get tired of explaining yourself about no touching.

I liked my tens unit too. I used it for a few years to help me.

Ada
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Old 04-27-2010, 12:36 PM #4
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I have just said 'that really hurts' over and over and over and over, and nobody touches me anymore. lol. And when they ask why, i say it just does. If you really want to know it'll take a full dinner to explain. But ' it just does' tends to do the trick, and people just say oh ok. and dont touch me anymore.
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