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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi All! :wave:

Been off the board for a bit b/c I had the flu just after Christmas (first time since RSD onset - that was fun- NOT!), and my holiday "visiting relatives" season was extended thru this past weekend. My family (including in-laws) have a total of 8 birthdays during the holidays and it seems like everyone had to have a big birthday party that we HAD to go to in addition to all the other visiting we had to do for the holidays. I thought we were done with it all yesterday, but I just found out my brother-in-law is coming to stay overnight Thurs. Aaaaahhh! Pre-RSD I could handle all this, but I'm sooooooo fatigued right now. I think it's mostly b/c all that visiting isn't just physically exhausting for those of us with the CR*PS, but I feel it's more emotionally exhausting. Whenever I go out socially, I have to put on my "I feel fine" face, meanwhile I'm either in my average level 6 pain or anxiety-ridden b/c I'm fearing a major flare-up during the party/event, whatever. I mean, just getting to the place is exhausting - thinking about having enough meds with you, when you need to eat/not eat with meds, or do you even feel up to going; will you be able to drive?
And then when you get there and are making conversation, you have to answer a thousand questions about RSD. Don't get me wrong, I think we [U]must[/U] spread the word about RSD, but if I have to hear one more person if ask me if my splint on my hand/wrist is because of carpal tunnel syndrome, I'm going to scream! BTW, my splint is unusual-looking - it's a white custom-molded plastic spica splint - it doesn't remotely resemble a carpal tunnel brace!
No wonder we get so emotionally fatigued!
Another thing that bothers me is when someone asks me why I'm not working. My sister-in-law, a nurse, asked me yesterday why I wasn't back to work yet and what I did all day long since I wasn't working. She said that her brother works with someone who has RSD, so why can't I work if they can? More than making me mad, it frustrated me that a nurse knew so little about RSD and also that I didn't quite know how to give a simple answer. I feel embarrassed saying that I take care of the house and do errands and not much else b/c I simply can't without aggravating my symptoms further. I guess since most people don't see us rolling on the floor in pain (we save that for our own "private hell" moments at 3am), then they assume we are just fine.
Ok, vent over. Thanks for reading! ;)





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