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 11-22-2009, 08:57 PM #11
justdeb justdeb is offline
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Star, i know nothing about all of this yet. BUt know that i am sorry to hear what you are now dealing with!! I assume from the bit i have researched and read here that continuing to work the area that is frozen is the best way to have a shot at renewing usefullness in future.
Again girl, so sorry!! Hang in there!!
hugs
Deb
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Old 11-22-2009, 10:03 PM #12
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i'm so sorry to hear this has happened.

i lost all ablity to move all toes on my right foot for about three years. and four years into my rsd, i went to a treatment program in boston that invovled intense PT, OT, and physc therapy. eight hours a day. for seven weeks.

they got my toes moving again, but now that i am relapsing it is becoming difficult again.

you need to start doing excerises that invovle your toes, picking up marbles, scrunching a towel.

hope it gets better.
keep me posted.
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Mslday (11-22-2009)
Old 11-23-2009, 07:24 PM #13
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I have been working with my husband in trying to get some motion into my toe. I have been allowing him to message my foot. It has helped a bit in getting me to relax and tollerate someone touching my foot. It sure isn't easy but we have been doing this every night. Each time it seems to get a little easier to tollerate. He has been trying to relax my toe. I have been working with it myself and there is not movement yet but I am not giving up.

Soaking it in warm water before he messages it helps too. I am really working with the other toes too, to prevent this from happening to them. I think when they had my foot in a cast, it included my big toe, it may have contributed to this problem.

Thanks to all that responded. I am sorry you are going through it too.
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Old 11-24-2009, 03:52 AM #14
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hmm.. I can't seem to find any information on it other than it happens.. I will keep my eyes open though.
I get the subcutanious lidocaine infusions every 3 weeks (in the bolus vacume packs that look like a baby bottle with an inflated baloon in it.) I get 1300 mgs at a time over about 8 hours.. I go into the clinic and get it put into my chest and take it out myself at home when it is done emptying.

be well,
Sandra
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Old 11-24-2009, 06:14 PM #15
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I just want to correct myself from an earlier posting. I said that Ketamine is a Sodium Channel Blocker too and that's not right. I confused it with something else. Sorry for the misinformation.

MsL
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Old 11-24-2009, 06:31 PM #16
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Quote:
Originally Posted by Sandel View Post
hmm.. I can't seem to find any information on it other than it happens.. I will keep my eyes open though.
I get the subcutanious lidocaine infusions every 3 weeks (in the bolus vacume packs that look like a baby bottle with an inflated baloon in it.) I get 1300 mgs at a time over about 8 hours.. I go into the clinic and get it put into my chest and take it out myself at home when it is done emptying.

be well,
Sandra
Hi Sandra, It seems hard to find any information on the lidocaine infusions. It sounds like you are getting the same pump that they are using over here in the lower mainland. The patient info they hand out with it says it is a baxter infuser pump. Do you get good results from it?

MsL
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Old 11-25-2009, 07:59 AM #17
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Mslday

Thank you for being open and willing to discuss the Lidocaine infusions. I'm currently in between treatments and that one sounds like a great one to try. I have had some success with the Lidocaine patches but as the RSD spread in my legs I could not continue the patches because the area that needed to be covered became to large.
Yesterday I discussed this treatment with my current doctor and he referred my to a RSD specialist in chicago who specializes in Lidocaine and Ketamine infusions. I really like the idea because it is less invasive than most treatments they have discussed. Thank you again for sharing and giving me a new option to try. It gives me a little hope that I might be able to manage this after all. =)
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