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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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01-19-2007, 07:36 PM | #1 | |||
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Hi
Hope you are all okish. In the UK we are having very bizzare weather at the moment and my pain/ spasms have gone out of control. My left arm is now pointing sideways and down my back and REALLY hurts, my right has twisted more than normal whilst my legs have been kicking, twisting and generally misbehaving all day. Also I have lost all control of my neck and can't open my mouth or swallow at the moment and keep grimacing (unintentionally). I'm also getting really bad jerking spasms that I haven't had in months. Even lying flat the spasms are throwing me around the bed - almost like I have been electrocuted. and it REALLY hurts - both the dystonia pain and the RSD pain. It's even worse than normal! Does anyone know if there is a link between weather/ air pressure and RSD/ dystonia symptoms worsening? and any ideas how to treat it? I have an exam on Tuesday and am really struggling with trying to study for it whilst my arms / legs flail or twist and the pain just makes concentration impossible. (and I am embarrased to go out with an arm randomly sticking out and jerking everywhere.) *and I seem to be in a visious cycle of severe spasms which set the RSD of because the jerky spasms normally involve my limbs flailing/ twisting, which makes the pain far worse - which sets off more spasms...* Thanks Frogga xxxx PS I already take muscle relaxants - diazipam, benzhexol, baclofen and something else but I can't remeber it - begins with t.
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01-22-2007, 10:45 AM | #2 | ||
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Hi Rosie,
OMG, what are you going through, you poor girl! I do hope you're doing better, I wish I had some suggestions. Keep as warm as you can, obviously, perhaps heating pads/ electric blanket? Not so long ago there was a thread about barometric pressure (Ada/dreambeliever's post?) - I think everyone agreed it made a difference. Makes a difference to me too...how are the (sorry, I'll say it quietly) exams going? Take care, please, soft hugs, all the best |
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01-23-2007, 02:19 AM | #3 | ||
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http://sci.rutgers.edu/forum/showthread.php?t=23602
I have had stomach problems my whole life. I am wondering if this plays a role. Hugs, Roz |
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01-23-2007, 08:24 AM | #4 | ||
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Hi is no question the barometric pressure cause flare ups. Major ones. I suffer so badly here in florida in the summer with the thunderstorms every afternoon that we had to leave and go up north. I could not take the additonal pain and endless flareups. When I got up north , pain level dropped and the frequency of flareups dropped to 20 %- huge difference. GOd willing I will never spend another summer in Florida. Just too too painful.
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01-23-2007, 01:01 PM | #5 | |||
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rosie,
the involuntary grimacing is a side effect of several meds (been there, done, that!).......don't know about all the rest of it, but i know that the dyskinesia can become permanent, so u might want to check with your doc or pharmacist about it.....and it can happen after being on a med for a long time, it doesn't have to be a new med. hope the exam goes well in spite of everything else going on right now. liz
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best to all, liz |
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01-24-2007, 07:42 PM | #6 | ||
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Hi Frogga,
Yes, barametric pressure gets to me, also! What liz said about meds makes sense! I know I've had so many of those types of reactions to meds myself. I don't think I've ever heard of RSD causing some of the symptoms you wrote about. But, of course, there are so many different reactions in everyone. I'm sorry! It sounds like you must be absolutely miserable! Keep us posted. Denise |
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01-04-2013, 09:42 PM | #7 | ||
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Hello. I am writing to you b/c you live the closest to me and my family, and i am hoping you will be able to help us. my 12 yo granddaughter has been diagnosed with rsd and has gone to the institute of pittsburgh for a 2 wk stay for physical therapy 6 hr per day. the pain is gone from her hands and feet completely but the pain in her back remains. we are considering nerve blocks. who would you recommend as the best in the area to treat rsd? we are considering U of MD or JHH, please respond ASAP, she can hardly bear the pain any longer.
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01-04-2013, 09:52 PM | #8 | ||
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