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 08-05-2012, 04:24 PM #1
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Default Sudden spontaneous spread??! Help!

So I introduced myself here just 3 days ago and now, As of yesterday my dystonia/cramping/spasms have suddenly appeared in my right foot. I also have burning and increased sweating but no color or swelling.. I am less than 3 months into this whole thing...my injury was very minor and happened in June. Obviously I will be contacting my doctors as soon as they open this morning, but can anyone tell me about your own experiences with spread? This is freaking me out! Ive been unable to bear weight on my left leg this whole time and on crutches, so I'm very worried about losing my ability to walk. Isn't this too fast??

I can't post the link to my introduction story, but it is post 436 on page 44 for those interested.
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Old 08-06-2012, 06:34 AM #2
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Some people have spread quite fast, while others can take years. that is one thing unique of RSD and this is one reason staging doesn't work. I might have signs in each stage, but not all in any.

Definitley contact your dr.
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GOD help me be faithful in the midst of my suffering. Alt1268
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Old 08-07-2012, 11:44 AM #3
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Both times my CRPS spread, it happened overnight. First time (arm to entire upper right quadrant) was 10 months after injury. Second time (to entire right side) was 2 years after injury.
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Old 08-07-2012, 04:16 PM #4
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Not sure, if this is true but it might be worth a shot. I have heard that Grapeseed extract can help control the spread of RSD.

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Originally Posted by askcb View Post
So I introduced myself here just 3 days ago and now, As of yesterday my dystonia/cramping/spasms have suddenly appeared in my right foot. I also have burning and increased sweating but no color or swelling.. I am less than 3 months into this whole thing...my injury was very minor and happened in June. Obviously I will be contacting my doctors as soon as they open this morning, but can anyone tell me about your own experiences with spread? This is freaking me out! Ive been unable to bear weight on my left leg this whole time and on crutches, so I'm very worried about losing my ability to walk. Isn't this too fast??

I can't post the link to my introduction story, but it is post 436 on page 44 for those interested.
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Old 08-07-2012, 06:40 PM #5
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Luckily I have a great team of doctors that are basically on call for me. Its hard to ignore a patient whose legs kick around a hundred miles a minute so in that way i am very lucky. I emailed one and was immediately brought in, seen by him and my neurologist at the same time, and unfortunately, it does seem that my crps has mirrored to my other foot/leg. Apparently I am just *that* lucky. I go for my first nerve block tomorrow for my left leg and to PT immediately afterward...at this point they are still determining what the best course of action is to do about my right. Left leg and foot (toe to knee) is severly swollen now but some of the pain seems reduced as the other leg becomes active. My main symptoms are burning and the god awful spasmsing/dystonia. Hoping tomorrow brings a miracle for me.

Thanks all for the info.
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Old 08-08-2012, 12:32 PM #6
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Quote:
Originally Posted by askcb View Post
So I introduced myself here just 3 days ago and now, As of yesterday my dystonia/cramping/spasms have suddenly appeared in my right foot. I also have burning and increased sweating but no color or swelling.. I am less than 3 months into this whole thing...my injury was very minor and happened in June. Obviously I will be contacting my doctors as soon as they open this morning, but can anyone tell me about your own experiences with spread? This is freaking me out! Ive been unable to bear weight on my left leg this whole time and on crutches, so I'm very worried about losing my ability to walk. Isn't this too fast??

I can't post the link to my introduction story, but it is post 436 on page 44 for those interested.

I have been suffering from this monster for 9 years now and it just started to spread a few months ago.... Its been in my leg leg from knee to right about my ankle and then to my left foot and as of a few weeks ago the right side of my head and face. The feelings I get in my ear and my right eye is even more unexplainable than the rest of my body. It's ridulous!!! I hope you have a good team of doctors you deal with and hopefully they can help manage your pain as best as possible :-/ I wish i could say the same for myself
*Gentle hugs*
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Old 08-12-2012, 12:25 AM #7
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My RSD spreaded in only 3 weeks. I had it in my foot for 4 years then had another surgery it spread full body and internal in the 3 weeks. For the spasms I would try baclofen if you dont already have it it works well for me that and valium.
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Old 08-12-2012, 04:07 PM #8
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I'm on four baclofen a day and it may be helping but I still spasm non stop. Valium doesnt help either. By spasm I mean my legs and feet kick, twist, look like they're trying to swim all day long. It gets violent enough at times that i have to be held in place so I dont fall offthe couch or tip my chair, etc. They only seem to stop while sleeping so luckily ambiem knocks me out. The lightest touch makes it a million times worse. I'm now in a wheelchair. Had the nerve block but it was considered a failure since motor symptoms actually got worse afterward. Fortunately all my other pain has subsided and the CRPS swelling and discoloration looks a lot better. Doctors are stumped. I see at least one a day and they are really trying to help so i know im extremely lucky in that regard too. I'm on Okinawa and will be finding out soon if we'll be transferred off the island back to the states.
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