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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


[QUOTE=jodom1979;3427741]Hey there,

Have you exhuasted all other treatment options? The reason I say this is I know of 2 people who have used ketamine and it worked wonders for about 2 months and just suddenly quit working on them. Whats your current DX? If you dont mind me being nosey!! :)

Jon[/QUOTE]

Jon,
Don't mind at all : ) I have rsd in my foot and ankle and it has spread up to my knee. I also have pain in both knees, both hips, and sometimes one elbow. I have had some lumbar blocks which were sucessful for about a week, and then the rsd started to spread. Lyrica sucked, but Nerurontin, Darvocet, and Ultram are at least keeping me from limping around and lying awake at night. The problem is that my doc says this is only masking my pain and it is going to continue to spread. He wants to do a lidocaine infusion for two weeks at home. This won't exactly work for me because I have 5 kids (1 yr to 9 yrs old). Also, I have heard some horror stories about people who have had this type of infusion.I'm not jumping into the Ketamine yet, I just want a doctor who is more open-minded and won't tell me that I'm screwed if I don't do this infusion that I DO NOT want. He says that if I don't do this or the SCS, I risk having it spread throughout my whole body and being stuck with it the rest of my life. I've had it for almost 2 years, so I don't know if I have a lot of chance of it just being "cured" anyway. O.K. I'm done babbling- that's what you get for asking : ) I really appreciate advice from people like you and Michelle who know what I am going through. Thanks.

Ann Marie
Hey ann,


Do you have the option to get a second opinion? Like Michelle94 (Hey michelle!! :) ) has said its very safe but I have yet to hear about someone doing it at home. That sounds a little wierd as you need to have medical staff around to check your vital signs too make sure everything is on the up and up. Although I think your doctor is (In my personal opinion) Strong arming you with the Do this or else speech. With RSD there are TONS of options to do and if this monster wants to spread it will no matter what you have done. Like with the SCS its not the holy grail for RSD yes, it has worked wonders for some people but it has also created a nightmare for others. I would definately think long and hard before allowing a doctor to go putting hardware in you. Surgery in general is a bad idea when we have this disease... If I was you i would definately try and hold those options off until you have ran all the other ones first. The lido infusion I think might help you but doing it at home I dont think is a great idea. Good luck and keep us posted!! Sorry about taking so long to responed I Have been so busy with life sometimes I forget what threads I have posted on.. So once again im sorry!! Peace

Jon
[QUOTE=jodom1979;3437361]Hey ann,


Do you have the option to get a second opinion? Like Michelle94 (Hey michelle!! :) ) has said its very safe but I have yet to hear about someone doing it at home. That sounds a little wierd as you need to have medical staff around to check your vital signs too make sure everything is on the up and up. Although I think your doctor is (In my personal opinion) Strong arming you with the Do this or else speech. With RSD there are TONS of options to do and if this monster wants to spread it will no matter what you have done. Like with the SCS its not the holy grail for RSD yes, it has worked wonders for some people but it has also created a nightmare for others. I would definately think long and hard before allowing a doctor to go putting hardware in you. Surgery in general is a bad idea when we have this disease... If I was you i would definately try and hold those options off until you have ran all the other ones first. The lido infusion I think might help you but doing it at home I dont think is a great idea. Good luck and keep us posted!! Sorry about taking so long to responed I Have been so busy with life sometimes I forget what threads I have posted on.. So once again im sorry!! Peace

Jon[/QUOTE]


Jon,

I actually have an appointment with another pm doctor on Monday. I left my last appointment in tears (which is VERY unlike me). My husband and my attorneys both said I needed to get another opinion. My doctor said I would have to come into the office every day and have home health come in on weekends to check everything if I did his at-home infusion. Just this week, my baby has had a stomach virus, my oldest is acting up at school because he's bored, my two-year-old has decided to potty train, etc, etc. How the heck would I handle all that with a pump in my spine?? I think that doctor has a God- complex. Hopefully the new one will be better. Sounds like you have a good one. I hope she helped you out.

On one of your other posts, you said that you have trouble sleeping with someone when you are hurting. I don't know what your finances are (because godness knows this disease is not cheap!!), but we have a memory foam matress, and it really helps me. I don't feel any of my husband's movements, and although i could still get bumped, he moves around less because he sleeps better- just a thought. Also, one more... The meds mess with our minds, but they don't change who you are. I'm sure your wife loves you, and knows you love her. Just remind her of that, and I totally agree with Michelle- lots of affection. You will feel better and so will she if you are not worried. i know it's easier said than done, but try to relax. When I am on the Neurontin alone, i am sad and worried about everything( although oddly, it puts my sex-drive through the roof), but if I take my Ultram too, I am myself. It sucks to have to find one drug to counteract another that you are already dependent on, but such is our life at this point : ) I really hope things get easier for you. Thanks for all your help.

AM





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