[QUOTE=momofrsdsjk;731862]
Quote:
Originally Posted by debbiehub
Debbie, yes her husband contacts Dr Rhodes, he has changed protocols on the pm cycle but not on the am cycle since Nov 17th, Dr Rhodes keep telling her she has to be off all of her meds before the machine will help her, so she weaned off everything except lexapro, she is currently withdrawing from oxy,,,but getting no relief from anything else makes it even more difficult..Dr Rhodes told her it could take 6 months for the machine to work. even maybe a year...not sure she can take a year of this let alone 6 months...everytime we try something new, she seems to get worse, or it spreads...anyway thank you for listening..
barb
Gabby, we live in san diego area, she has had ketamine at ucla, with Dr Prager, works for awhile, but very expensive, has a scs implanted, but stopped working 1 month after it was placed. we have gone thru alot of options, but she continues to get NO relief....Again thank you for listening
Barb
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Barb,
So sorry to here all she's been through but so lucky to have you.
I have also done the ketamine route, 3 - 5 day inpatient procedures in NYC, with Dr. Richman and boosters is PA with Dr. Schwartzman. It worked for the burning, sleeping, migraines but that deep joint pain is always there. And when I do flare it's not to often but it still goes all the way down my right leg.
I know everyone thinks I'm crazy but what has helped me I don't want to say with the RSD but with functioning through life with it is excercise. I go to the gym 3 times a week and I can't do everything I would like but I am up to 45 minutes on a elipical machine which 8 months ago I was having a problem walking out of the car. I believe there is some type of connection between excercise and conntroling the central nervous system, I know that's a big statement. We all have heard of Dr. Sherry the Pediatric RSD Specialist in PA, that's exactly what he is doing, that's actually why I started to push myself to at least try. I was tired of being tired, gaining weight because I was just sitting around it was making me more crazy than the RSD. Believe it or not there is a group of doctors trying Dr. Sherry's protocol on adults in the Chicago area. If they ever come out with a study that proves it works on adults, I'll be the first one on line, because I believe there is something to it. It's horribly hard at first and embarrassing because you see all the jocks and women that look terrific.I go to a YMCA and I started because they have a great pool but it's to cold for me. I've asked them to turn up the heater, but they said it's at 82 degress I just could not get in my body just locked. But the excercise definitly helps me. My 16 year old daughter comes with me so it kind of serves two purposes, I get to spend time with my daughter and if you have teenagers we all know they are mostly out or at school or doing something at school, studying or on the computer or texting. I really think both of mine would just melt to the ground if they did not have there devices. But I love them.
Anyway good luck.