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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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#1 | |||
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Hi friends! I did go to my nephew's wedding reception. My one sister looked at me like I was nuts! when she asked me if I was better?? I said no.. well, she just said "Oh, then walked away"! I don't want her pity, but what's up with that??
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I Will Always Believe in Poems, Prayers And Promises Love, Desi . |
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#2 | |||
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Hey sweetie
I am sorry that you are now in so much pain from the wedding - but YOU DID IT!!! ![]() I don't tend to nap but I do get up for a couple of hours then lie down for a bit, then sit up for a bit then lie down abit etc etc etc... Right - take care my dear and I hope the flare calms down abit soon!!! Love you loads!! and sending pain free hugs.... Frogga xxxxxxxxxx |
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#3 | ||
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babe! i miss talking to you! you have my sympathy...
i only WISH i could sleep. i've only been getting about 3 to 4 hours of (restless) "sleep" a night since i went off my amitriptyline. it was making me way too tired in the day. either way, i'm a mess. so, i'm grimacing at all the hugging you received. i can't imagine. maybe at the next wedding you should wear a shirt that says FRAGILE!!!!! hope to talk soon, love ang
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i thank you God for this most amazing day, for the leaping greenly spirits of trees, and for the blue dream of sky and for everything which is natural, which is infinite, which is yes. - e. e. cummings |
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#4 | ||
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Senior Member
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yES I DO TAKE NAPS AND WHEN I DON'T,I BEEN KNOWN TO FALL
ASLEEP AND HIT MY HEAD ON THE COMPUTER,BOY THAT WILL WAKE YOU UP OR PUT YOU TO SLEEP WITH A BIG BUMP ON YOUR HEAD WHEN YOU WAKE UP. HA i'M A PNER AND NAPS ARE A MUST. i BET YOU WERE EXHAUSTED GETTING READY FOR THAT WEDDING, AND NOW GETTING OVER IT. BUT YOU WENT AND WE CAN'T GIVE UP, THOSE PEOPLE THAT DON'T WANT TO UNDERSTAND PROBABLY CRY ALL DAY OVER A HAILNAIL. AND THOSE WELL SOME THAT KNOW YOU ARE IN PAIN,THEY SAY HOW ARE YOU,AND BEFORE YOU CAN SAY ANYTHING SAY THAT'S NICE,AND WALK AWAY. YOU KNOW WHO THEY ARE IT HURTS,BUT IGNORE THEM. i'M GLAD YOU WENT AND I'M PROUND OF YOU. iT'S REALLY HOT HERE IN MO. AS WELL. BLESS YOU HEART. tAKE CARE HONEY. ![]() |
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#5 | ||
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Junior Member
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Hi Desi, Glad you made it to the wedding but sorry it came at such a price. As far as telling others about my "condition", the only people I talk with now are my husband and all the nice people I've met here. Other people just do not understand and say things that just crush the spirit. As far as naps go, that is the only way I can function. Every day at lunch I'm back in bed for 1 to 2 hours and by 9 at night I'm in bed again. I feel like I'm sleeping my life away but I'm in a constant state of exhaustion so I have to sleep.So, don't feel bad about needing naps...that's what pain does to us. Hope you feel better soon. Jeannie
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#6 | |||
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Junior Member
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Desi
I went to a wedding in Ohio a few weeks ago that I'm still recovering from....an 8 hour ride in the car ![]() I can't take naps but I but to help with the lack of sleep at night I take some down time many times a day....meditation is so rejuvenating if I can get myself in that peaceful place. Jeanne |
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#7 | ||
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Member
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Hi Desi, gentle air hugs
![]() I tend to NOT be able to fall asleep during the daytime hours. I either have to be sick or the meds kick me into twilight zone. However, during the night, I tend to toss and turn from the pain and can't get completely comfortable. My dreams though are so active I wonder if I am even getting the sleep I need. (Lets see, I have dodged bears & guards with my son in a building and have become Hugh Hefners g/f - woke up though when my mom told me I was being yucky) Glad you got to enjoy the wedding, sorry you are still hurting.
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. . CHRISTINE . . I AM NOT A DRUG SEEKER, I AM A PAIN RELIEF SEEKER. |
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#8 | |||
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Magnate
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I took a 20 minute nap today before Dustin came in yelling Grandma. That's as long as I get when I have them. I sometimes take 3 or 4 a day. Like Frogga says, when we don't get but maybe 2 hours of sleep at night, we are down for the count in the daytime.
Any function that we decide to go to for fun seems to zap us. The 4th of July dinner did that for me. As far as talking to anyone about the RSD. I think that it just never runs it's course so people get to the point to where they don't want to here it anymore. I notice with me, they will say," how are you" and before I get one word out they are on their life story. Glad you went and even more glad you had a great time. Also when you are out like that you will run into people with RSD and Fibro. When I get out in a croud all I have to do is mention either one and they start crawling out of the woodwork. Hope you bounce back soon. Ada |
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#9 | |||
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Thanks sweet frogga.. I too believe folks who do not understand us RSD "patients" can take a flying hike.. LOL Yes.. It "Rocked" having someone tell me about her daughter having RSD and she was well educated on her daughters RSD. I also am pleased that I went to the wedding recep. too.. amazed the heck outta me too.. but wiped me out. Frogga.. when I do take a nap here and there.. I toss and turn, can't really, really sleep, but finally fall asleep for 1 to 1/2 hour. I loved sleeping on my tummy, but can't no more because it's so darn uncomfortable!! I too love ya loads too and sending ya lots of warm and gentle hugs my friend!! Love, Desi
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I Will Always Believe in Poems, Prayers And Promises Love, Desi . |
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#10 | |||
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Hi ya Ang! I loved the idea of weaking a "shirt that said FRAGILE"! LOL can't wear that to a fancy wedding reception though.. LOL Or can I?? ha ha ha take care of yourself, Ang and thank you! Love, Desi
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I Will Always Believe in Poems, Prayers And Promises Love, Desi . |
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