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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


ya know karen, getting your meds esp that low dose of MS contin you are on at only 15 mgs 'could' possibly help along with the other two raised up even more possible since they best hit this type of pain better? but that IS a pretty small dose of MS. i cannot currently of course recall the other two, was it nortriptyline and neurontin?? like i mentioned in the PM forum, they 'usually' can be raised up for better coverage too depending upon any given side effects. i do believe you still have alot of room to go upwards on them. my memory is just getting worse and worse along with everything else or i would have recalled your doeses on those too.

but this RSD crap just sucks, and is soo very hard to rein in that burn he** its sick. i was wondering just how they determined that you have BOTH neuropathy and RSD? they just are so much alike in some ways i would think it would be hard to tell one from the other in your situation?
have you ever tried the lidocaine patches for like ANY of your extremity/RSD areas? i cannot remember if i asked you that one, or the lido ointment that you can rub into the skin? i was also Rxed what is called 'prudoxin cream' when i was dealing with the very beginning of what is my central pain syndrome while still in the rehab hosp after my spinal cord surgery that ended up also triggering my RSD very shortly after i was discharged. it can help with the pain of RSD too. central pain is a syndrome that occurs thru SCI and its a constant 24/7 stingathon from absolute he** just like the underlying components of RSD kind of is(this feels like a severe second degree burn that just will never ever heal)? i have both RSD and this other crappy stuff to deal with and have used some of the RSD treatments on my central pain and vice versa, since neither one really responds well to just only a narcotic approach. out of the box type pain really does call for more out of the box types of treatments too.

with the feet being involved, you cannot really totally 'numb' or you risk even more possible problems. but trying smaller pieces of a cut up patch over areas that feel the deepest and most hellish could help? i cut these up and use them like for alot of different pain generators too. and that ointment too can go anywhere.

how well do you think your PM really 'gets' your RSD? that matters alot in whether or not you should be seeing someone else too or not in many ways. with your feet, you could possibly try sweeing a podiatrist or if there just is someone else in this "line" of specialty that deals more with vascular crap. alot of what is going on with esp your situation is also very much a vascular type of component too. i see my PM most often(every 28 days) but both my really great ortho who had to do my two knee surgeries on that RSD knee in 05 and also did my rotator cuff repair also knows alot about my RSD stuff as well as what is called a physiatrist? this is not a physc doc but a very highly trained physical medicine type of doc that just knows everything about muscles nerve and overall more in depth body mechanics too. he was my rehab doc in the post op phase trying to help me to regain my L leg and get some use back in my L hand. both were knocked out with the L hand severely damaged during my cord surgery. he knows alot about RSD as well. but these are who I see only becasue they just do know alot about RSD among my other sci issues too.

having the symp blocks done really is about the only thing that has ever really helped me to get that pain down in that knee thru my foot when it goes way beyond what even my TENS will manage. if i have to ramp that sucker up too high, it will create its own form of spasticity. i already have that crap in the L leg and do not need it there too,lol. so when things go beyond THAT for me, THEN i will usually go in for that series of blocks again. but i DO get worse pain before it gets better. the last ones, with the first of the series, my knee just exploded into a nightmare for about six days, but then it DID start to go back down and then under what it had been before i had it done. i just don't know why all blocks seem to do this on me. but you can have the blocks redone too if it has been awhile since youy had them done. it can help.

as far as your TENS goes karen, when yopu got that unit, did an actual PT person who is VERY familiar with how that unit just works and the best places to place the electrodes get told or shown to you too? if not, someone really does need to actually show you where to place them(a criss cross pattern usually works best to get that current to go 'thru" the worst pain areas and NOT in a line that only runs on the sides of your foot where the trodes are only) and what the different settings just do to help individual pain too. i like the pulsating current myself. but the TENS really can be a very useful tool as well depending on if you can tolerate it, some cant because of very severe hypersensitivity. i just try and stay away if i can from that more hypersensitive area i have.

just what is it that concerns you most about the feet hon? i know they can hurt like hell and change into wierd colors and i know MY toes have "shifted' a bit too. it is kind of part of this whole nightmare. the stuff i try or use most i think i have either put it here and in the PM forum too. soaking in a bath with a cup of epsom salts which i do more for my muscle damage and spasticity really also seems to help with my RSD too for some reason. its just pure granulated magnesium that you can buy at any drug store. mag is natures lil muscle relaxer, so it 'can' at times help with certain components of pain too depending.

there just are many different things that make up RSD overall and how any given individuals will actually play out or just what particular symptoms one will have. i have RSD from severe SNS damage done by a scalpel while they were in my cord and other pain syndromes with one on the very same side as where my RSD is too, so 'my' presentation of this has added componenets too to deal with. then there is the other possible pain crap that comes from spinal issues and other stuff we can just have. so it does take a very much multifaceted approach to really try and manage anyones given RSD and overall pain generators and triggers.

you just keep on trying things to see what really works best for your pain and symptoms. and anything new you can find, just becomes one more little "tool' you can use too for back ups when meds just will not help at all, or during THAT particular flare or day. the more stuff you try, the more things you just 'have" to work with. when you sleep karen, do you try and sleep with your lags raised up some? this is what i do,and i have to kind of sleep in this 'nest' type of thing since my c spine is falling apart too now. my head and upper back is raised up and so are my legs(supported with pillows from right where my butt stops on down to the feet) or i just cannot sleep at all. keeping the legs raised up also just helps to keep the swelling down too. whenever you just CAN, try and keep the feet up above the heart. if the swelling starts to get too way out of proportion, there are dieuretics that can help, but this would be for more extreme since you DO have to be very carefull with balancing out potassium loss with this crap. it requires in most cases to have an Rxed form of potassium, not the little vitamin suppliment stuff that simply does not have enough, and is simply highly unpredictable as to just how much is REALLY in it. so the Rx form is more direct with dosing. so they can be used, but usually left for the worst types of overall swelling tho.

i hope some of this has helped you karen. but DO have a much more honest and 'telling' next appt with your PM so he now truely KNOWS your pain and how this hell is impacting you and your life, or you just will never get the "appropriate and true types of pain coverage you so desperately need right now. take care hon, marcia





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