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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

hi walleye,i just had a couple questions for you since i too live in MN. just who have you been seeing so far for treatment/surgery,and do you happen to live near the metro area? i live in the so metro. who is doing your pain management right now? who is your surgeon? i do have some great recommendations for these docs if you need some. i have had the fortune of getting some really great surgeons and other specialists but also some real idiots too.

i use the lido patchces too but there is also a lido ointment? that is the same 5% as the patch but not quite as good as the patch since the patch kind of "holds' the lido over one spot? but the ointment can work great for larger areas or areas like in the hairline or betwen toes ,basically any areas where the patches wont fit well. i also started using this other ointment called prudoxin cream? i was in the rehab facility(bethesda in st paul) i was transferred to after my spinal cord surgery done at the U of MN caused my damage(this surgery is when my SNS was also damaged which fired off my RSD a few months later). the physiatrist in charge of my care was the one who started me with the prudoxin cream. it does help with the hotter spots of buirning pain. this was actually rxed for my central pain syndrome(which has some of the very same components as RSD but just affects skin surface with burn/sting crap) but this does work well for some of my RSD hot spots too.

one other thing that has worked amazingly well for the RSD flares,when that horrid burning just gets crazy on me is the TENS unit. as long as i can get that current to pass thru the knee where my RSD is,i can usually meet that burning with the signal then pop it up one notch above it and it in most cases,will kind of override it and at least make it more tolerable to live with,at least til it calms down some. one really insane thing with my RSD that actually runs from just above my knee on down thru the bottom of my foot is my knee loves cold and it makes the pain more bearable(i know about the contraindications,but only use this as a last resort at times)but when i get down to the foot itself,cold will create one hell of a nasty pain reaction(just lovely living here in the frozen tundra of the north right?). my foot loves heat. this is just really crazy to have all in one affected area. don;t quite understand that one. but with this condition,there IS ALOT of insanity here anyways.

one thing i have foud,since the RSD itself is usually originally triggered by some level of sympathetic nervous system damage,anything that the SNS actually governs,like hair and nail growth,or the fight or flight response all can get pretty screwed up too. my body has been stuck in that fight or flight mode since the day of my surgery and the damage,and it has affected my spasticity and metabolism too to the point where even my weight is just continued to drop becasue my metabolism from that For F response makes your body 'speed up"? and my hair is also falling out all over the place. if you actually look up everything that the SNS really governs in our bodies,you would see a pretty long list of things that can become affected.

one REALLY insane thing i have where i just have heavy sympathtic damage that crosses my face up to my left eye(i also have horners syndrome too) any dental work i have had done,even just a simple drill and fill can casue a major spontaneously created pain syndrome,all by itself. it just shows up out of nowhwhere. this has nothing to do with my actual RSD that is like i said,only in the right knee on down. just in that one area from my spinal cord damage level(C 7-T1) on up to that horners eye. very very insane stuff there. nothing in my body is just normal anymore,nothing. luckily i have had great docs and specialists who Dxed this pretty early in me.

one thing i did find is that even this far out after my Dx(it all occured in 2003) i still had a good response from a sympathetic nerve block done in my lumbar area during the summer. it brought down my hellish burning that had just really gotten out of control for about two months so we decided to try it again and it did help. wasn't too certain this far out if it would actually do anything for my RSD,but it did. i personally do think there is still some value in still getting an occasional symp block no matter how far along your process is. it sure did make a difference for me. you just never really know for certain what will or wont work with any real condition til you at least give it a shot or two,depending. i have tried many many different types of meds for my RSD and central but unfortunetly even the ones that worked gave me such awful side effects i was pretty much non functional. thats the biggest reason i like my TENS and the lido and prudoxin,i don;t have to 'take it inside",ya know? just some stuff for ya to chew on. good luck walleye,marcia

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