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 02-09-2014, 10:39 PM #1
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Default friends and family

I noticed since I got RSD people pull away.I know that I have changed,but they could still show they care.My own son and his wife hardly ever talk to me unless they need something.but on the other hand my youngest is wonderful.He calls atleast 3 times a week..
My friend Sherri is all about her too.I texted her to see how she is.whats going on,you know,I got a text back ,saying good and a lot of new things I said whats going on...dropped me...I wonder about people..Its always about her..oh well her loss..
Glad I can whine here..You guys are great..But really I bet we all have changed.Pain takes over,and you cannot help but change.
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Old 02-10-2014, 12:16 AM #2
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Quote:
Originally Posted by moosey2me View Post
I noticed since I got RSD people pull away.I know that I have changed,but they could still show they care.My own son and his wife hardly ever talk to me unless they need something.but on the other hand my youngest is wonderful.He calls atleast 3 times a week..
My friend Sherri is all about her too.I texted her to see how she is.whats going on,you know,I got a text back ,saying good and a lot of new things I said whats going on...dropped me...I wonder about people..Its always about her..oh well her loss..
Glad I can whine here..You guys are great..But really I bet we all have changed.Pain takes over,and you cannot help but change.
I would implicitly agree with everything you have just stated. My brother in law will never ask how I doing (lost my health, business of 20 years, etc.)......ever!....but will not let me leave his house until I know everything about his wife's hang nail and how it has severely impacted their lives....damaged their future....yeah
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Old 02-10-2014, 12:59 AM #3
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Yeah Moosey, I've experienced some similar situations.
I felt so blessed to have work friends I stayed in touch with and I make sure I make the necessary efforts and don't talk in depth about my disease.
Still, I feel them slipping away. Family, well, they're in denial and just don't
get it & maybe don't want to. My husband is the exception, he gets it but
you know there's only so much he can deal with.
I've become very attached to this group (maybe too much so) for that reason.
Ironically, I can't handle too much typing at one time & it's slow & tedious at that.
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Old 02-10-2014, 03:42 AM #4
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Default Hey everyone :)

As I was reading thru these posts I realized I'm the one that's pulled away from friends....I'm closer than ever to my immediate family that consists of 12 people but......I'm home 99% of the time because going out just makes my feet worse. I keep promising I'll meet my previous co-workers for lunch one day....they have offered to come to my town for lunch so I don't have to drive far and I just keep putting it off.

I wonder why I do that ? I'm fatigued most days and on the good days I try to get some cleaning done around the house.

Oh well.....it's 3:40 am and I've been unable to sleep due to the 'stuff' going on in my feet.....I'm blurry eyed and need to try again

Thanks everyone for being here. What a nice group of people I found.

Debi from Georgia
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Old 02-10-2014, 06:01 AM #5
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I think both effects happen - moosey and st George are both right. People pull away because they can't deal with it and get fed up with having to fit our new circumstances into their life (they liked the old me lol, but the new me is too complicated and not as much fun ).

We pull back from people because we hate to stand out, but blending in is hard work, and hiding the pain to make others feel more comfortable just doesn't seem fair all the time. Plus we are scared of something happening when we are out, scared of making a scene, or having someone tread on a foot in a busy place, etc. so many things to think of now....staying in is easier. Sad but true.

I'm fed up with my four walls....I go out for lunch with a friend sometimes, but my relationships with them have definitely changed and we aren't as close. They have to be a really good friend to stay very close when you change, or become so unreliable and have so many bad days. And we all need to let those feelings and fears out....it's easy to scare away someone you thought was close enough to deal with it. I did that in the early days, broke down with a close friend and we talked about it for hours, she was asking questions and it was good to talk it all through. But it changed things and hasn't been the same since. Very sad

I'm careful with the friends I have now not to show too much or ask much of them. Disappointing though, and hard not to feel let down. Would I have been the same if it were the other way around??? Hard to know honestly, maybe I would. I hope not though.

Take care everyone, and thank you for being the ones who I can say this stuff to. Always appreciated

Bram
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Old 02-10-2014, 10:05 AM #6
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You know it was really nice seeing these responses.I now look at the whole thing differently ...Truthfully I guess I pulled away too...like said so well.Its easier to stay in then be around others...I remember about 2 years ago,in a really bad spot in my life,went to breakfast with my husband and some friends..Alot of pain,and mind was not in a good place..I blew up at my husband for the most dumbest thing,they go,he loves you he did not mean it like that!!! it took me a long time to deal with that.I felt really stupid.I let my pain take over..But really I still feel like people will judge me..I try so hard to fit in..Pretend..I guess..What bothers me the most is my son does not even ask ..Maybe I am being pigheaded,but I feel like I am tired of reaching out to him,, eventhough I know that's probably wrong,but it is always one sided with him..I try to tell people what it is like with RSD and honestly they do not care..I told them look up RSD..read about it..I know they do not or they would ask questions..I do have to say,my HUSBAND has been the greatest...We have been dating for 10 years,lived together 5 on feb.14th,and he married me 12-22-2012 knowing my illness...He is the greatest..He is my whole life..
I just want to tell you all I guess we need to step back and start blaming our-selves some too..We all have changed.I think we feel lonely,but then again safer..not judged then..Thank you for being here..You All are the BEST
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Old 02-10-2014, 10:27 AM #7
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Default Me again :)

lol....it's not that I don't want to burden friends with my condition, I just don't want to fool with them...that is so mean of me I know. I'm guessing at some point, when I hope everyday is basically the same, I'll get in touch and meet up with them. I'm a very outgoing person and I worked with those people for 26 years. I'm only 9 months into this SFN but I still haven't really come to terms with it. I'm only on my 2nd medication, Cymbalta added to my gaba so I have lots of titrating up to do to see if it works and more time if it doesn't by my neuro adding other drugs as needed. Such a long road and I'm not even a mile into it yet....lol...have to laugh.

What a great conversation this is !

Debi from Georgia
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Old 02-10-2014, 11:28 AM #8
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Quote:
Originally Posted by moosey2me View Post
I blew up at my husband for the most dumbest thing,they go,he loves you he did not mean it like that!!!
Boy, can I relate! My poor husband is a saint and since the onset of the CRPS I've snapped more than once on the best thing that's every happened to me - which doesn't help my self-worth one bit.

I'm trying to sort out what different responses from friends and family mean. For example one of my sons will ask questions and let me talk and then say supportive things, and the other doesn't ask and doesn't respond when I do talk about it. It's starting to dawn on me that the son who doesn't ask and doesn't talk is just worried about asking or saying the wrong thing and would rather be a listener. I know I respond differently to different people too. For example, I have some really funny friends who've made wisecracks when I'm talking about my pain or the unwelcome changes in my life and I have to admit - they're funny enough that it IS a "pattern interrupt" and I wind up laughing too and feel a little better. On the other hand, I've discovered that even though my husband is very funny he'd better not joke with me when I'm talking about my struggle with CRPS or I feel completely alone and abandoned.
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