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 05-05-2015, 01:22 PM #1
AliM AliM is offline
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Join Date: Jul 2012
Posts: 21
10 yr Member
AliM AliM is offline
Junior Member
 
Join Date: Jul 2012
Posts: 21
10 yr Member
Default CRPS: Managing with all-day company?

I thought to ask here for suggestions. I have battled with the CRPS in the balls of both feet for the past 3 years, and was diagnosed 18 months ago with 2 forms of arthritis. (RA and AS) Even though the RA and AS definitely effect every aspect of my daily life, I think it is my CRPS that affects me the most, with tiptoeing to avoid flare-ups, etc.

One thing I struggle with, though, is I am easily exhausted, and I have learned the hard way that if I wear myself out (physically or emotionally), I seriously pay for it for the next 2 days: crazy pain, exhaustion, inability to do much other than sit and try to let my body recuperate. I have learned to avoid day-long activities (hectic family reunions, visits to amusement parks, etc.), but lately I have struggled with the less obvious things: For example, my daughter and her new husband came to visit on Saturday and were here from 9am to 11pm. It's not like we went to an amusement park, for crying out loud, but by the time they left, I was exhausted from trying to put on a happy face while feeling dumpy all day long, and struggling not to burst into tears as I shooed my teens into bed.

I hate that even a day at home with visiting family is too much for me to handle. I feel like I need a couple of hours mid day to be completely alone and recharge. But that's hard, when they're excited to tell you what's happening in their lives, etc. and I'm excited to hear those things!

How do you handle things like this? I feel like I can only handle half days, but that's not realistic, especially when people don't "get" this disorder. I would LOVE to have some suggestions and please please hear that I am not alone. Or maybe I am? Maybe I just am super weird?

Thanks for any suggestions you have about trying to cope with things like this!
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