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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hey everyone,

Sorry I've been away along time, too many things happening & too much to cope with.
I really appreciate all of your info, it helps. I do live in Ohio, but there are no dr.s in my area that have a clue about CRPS/RSD. So since I go to U of Mich. for my Lupus & such, I have been going there for my RSD/CRPS.
Things seem to take such a long time. I just had a heart to heart with my pain doc he was very honest with me.( He also let me know that he is leaving Uof M & going to private practice & not be handling pain pts. anymore to spend more time with his family). What he explained to me is that my hopes to walk again may never happen, or only be for a limited time. Since the precipitating factor of my Rsd was surgeries on my left ankle & foot that was performed incorrectly (in OH) the new bone placed in the two sites have not grown (even with wearing bone stimulator 10hrs a day Sept.07 thru Apr 08) because the placements were wrong & some are "floating" in ankle joint. and the other has left another supporting joint "disconnected" so I need to have an operation to correct these as well as two other joints that were damaged in the surgeries. But my RSD has not been responsive to any treatments so far. This is why they want to put SCS in. But the other problem is that I have had low back surgery and have serious degeneration in the low back. Back is usually managable but with any aggravation to it causes me to lose even more mobility. So I am scared.
I explained this all to my dr. and I asked for the honest opinion of my prognosis. Since RSD is continuing to spread up the left leg its to mid thigh now & other areas in body. He said that he has had a few cases that have not been responsive to any treatments, even SCS, and I might be in that category, but that I should try the SCS because it may help. He let me kow that SCS does very little for some of the advanced RSD symptoms (it is mainly to "confuse" or "reboot" the Symp. nervous system & help with burning pain & sensitivity.) But since my RSD had spread to my motor nerves & I am begining to have CNS involvement the SCS will only be a partial help, but better than nothing.(I hope):confused:
I experience toes & foot uncontrollable muscle spasms & contractures with or with out stimulation. I am beginning to experience almost a paulsy type tremors through out my body, they don't last long but are very aggravating. I am mainly confined to my home and have to position myself in certain ways to keep swelling down somewhat, and to maintain any type of thermal control (doesn't stop cold but it improves color). Staying still helps me but is very lonely & causes serious family issues. I can only ambulate with a knee cart and after an hour or so of being up & around (good day) I have to stop & I am having serious issues with left knee bearing all of left leg weight that needs to be addressed but can't be fixed or treated at this time. I have had to stop many of my Lupus meds which is allowing the Lupus to take over my body, so I really feel like there is no hope. I am having abnormal lumps developing in lower left leg, and biopsies have researchers confused.(have never seen results that i have- thus no answers for me as to what it is.) I feel as if I am fighting a losing battle with the RSD, Lupus & everything else!:mad:
But I am holding on to the hope "That God never gives us more than we can handle." And that every battle we face makes us stronger & has a purpose.

Again thank you for your inputs, I really appreciate the support. :angel:


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