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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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Member
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Hey all,
I just want to moan about RSD deprivation... Since the holidays I have not slept more than an hour a day. My blood pressure etc has meant that I have spent 95% of the time flat in bed (if I sit up for too long then I get the migrainey/dizzy/vomiting thing.. and not having my "normal" wheelchair (that tilts and reclines so I don't have to be straight upright) has made life even harder. Also really struggling with food again... at least chocolate is disolvable.. REALLY don't want to end up back on syringe feeds!! and I am SO frustrated.. all my friends are home from uni.... and at this rate I will have come home, stayed in bed for a month and then gone back to uni... I just can't believe I am paying this level price for just travelling home.. I have so much work to do but can't even look at it. Seriously, I have stared at a ceiling ..... generally in the dark with ear muffs on. for a month. going to ring pm dr tomorrow to talk about "options", cos this pain is going to send me insane at this rate!!! Love Froggsy xxxxxxxxxx
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It's always darkest just before dawn... but smile and the world smiles with you, cry and you cry alone |
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#2 | |||
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Co-Administrator
Community Support Team
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I hope dr has some good options to suggest and can help you.
Best of luck when you talk with him.
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Search the NeuroTalk forums - . |
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#3 | ||
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Junior Member
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Hi frogga....Sorry you're having such a time of it. Your posts do so much to brighten my day and lift my spirits. Because of you I keep putting one leg in front of another and when I have to use my wheelchair and scooter I think of "frogga' and I'm inspired. I'm new to this board and life with this little demon but one of the blessings in all of this is meeting people like you. Wish I could do something to make you feel better. Sometimes it helps just to know that others care. So, frogga, I'll be thinking of you today and hoping that things will ease up for you. Hang in there....YOU CAN DO IT!!!!!
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#4 | ||
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Hi there!
So, so sorry to hear you're crook, Frogga. Yes, that really does suck, to say the very least! Wondered what you were up to, never dreamed it was heavy-duty ceiling-watching....you need an interesting ceiling. Don't suppose you're interested in astronomy? (I am...). Just in case you are, there's a fabulous computer programme called "Backyard", you can set the night (and day, but you can turn off the sunlight) sky to anywhere in the world you are and watch the heavens move in realtime...and find out what's what...plus lots of other bells and whistles. Fabulous program. Anyway, I suddenly thought that if a friend could attach a projector to your computer and point it to the ceiling, you'd have something to look at, but still dark and soothing and all that. Just me musing...... When do you get the chair back, or replaced, or is that not an option? Good idea to talk to the doc, hope he has some bright ideas pronto! Don't worry about all the work, get yourself sorted first and foremost - you'll catch up soon enough once you're a bit more comfortable. What does your mum say about it all at the moment? Take care, sweetie, thanks so much for keeping in touch with us, I know it's not easy for you to do so, but I know we all appreciate it very much, and your unfailing helpfulness and good humour. Loads of hugs, love ya!! all the best ![]() ![]() ![]() Last edited by artist; 04-09-2007 at 11:37 AM. |
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#5 | ||
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Dear Frogga,
I am in 100% agreement with artist. Why isn't your chair sorted out yet? Is is getting fixed, I hope it is anyway. You need to get out some with your mates. At leasts at times when you are more up for it. Love, Roz xxx |
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#6 | ||
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Junior Member
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Hi Frogga,
I am also so sorry you are ceiling watching at this time. I have followed many of your posts and know how much you go through. And during all that you boost others here and make them feel better. You are truly an amazing young lady. Sending you a big warm hug (gentle) and tons of best wishes that you feel better soon. Words fail me. Just know you are being thought about and wished well! ![]() Ina |
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#7 | |||
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Junior Member
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![]() Hi Frogga! I just wanted you to know that many times I do not respond to your posts, but you have done so much to help me stay positive ![]() about the RSD DEVIL that we all seem to fight with on a daily basis. ![]() I am so into ceiling staring. I find that I get extremely stressed in DR offices, so I stare and count the tiles first, and then I try to count all the little holes that always seem to be in those offices (the hanging type). By the time I get to the second tile to do a count comparison, the doctor usually comes in and I am much more relaxed... ![]() I know that this probably is not much of a help, but here is a little thing to watch and maybe take your mind off of things for a few moments. http://members.shaw.ca/tfshannon/dontworry.htm Gentle Hugs, Rain ![]()
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#8 | |||
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Member
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That was a very Mild Moan for what you must be feeling inside! How about Malignant Murderous Mashing Mayhem? I support your grim determination to stick to dissolvable chocolate rather than return to syringe feeding. Cadbury eggs plentiful. Are movies with morbid sense of humor an option? Life of Brian's "always look on the bright side of life" song is my personal fave, but not everyone shares my bad taste in black humor... Am sending you a gentle hug and a big Hang On cheer. Uni and mates await. Don't give your sister the satisfaction of crumpling! xxxxxxxxxxx
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#9 | ||
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Member
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Hang in there.
I wish you the very best. |
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#10 | ||
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Member
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Frogga,
You are in my thoughts and prayers! Hang in there, girl! ![]() ((Lots of Love)) |
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