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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hello everyone. I'm new here but not with RSD. I've had for a year now and I'ts almost taken over every limb I have. It started in my left ankle with a sprain. The doctor caught it right away and started me on Gabapentin, slowly working up to 4 pills a day. A first it was weird. I would fall down trying to get to the door. I had every symptom. The memory loss is really bad and getting worse. Then RSD spread up to my knee and the doc bumped me up to 6 pills a day. Because My body had adapted to the meds. Then it spread again to my hip and I was bumped up to 10 pills a day. Also I wasa going to PT everyday. In addition to nerve blocks twice a week. The blocks really helped me except my thigh would go numb almost every time. And there would be so much pain from the needles and the iv's. I had 25 blocks done until they stopped working. In October of 2002 my percreption was changed from Gabapentin to Topomax. So I had to go down to 3 pills a day of the Gabapentin. I ended up housebound, walking with a cane just barely. Then in December the doc did blocks everyday for a week along with intense PT. This got me walking again. However, it made the RSD spread into my left foot. So now my whole left leg has. Then in January of this year, the RSD does something called a mirrored image where it transferes to the other leg/arm anything. That's what happened to me. So I have it all thought both my legs. At first it wasn't a strong in my right leg but now it is. Right from foot to hip. Starting at the end of January I began a new procedure called Sodium Aymital Infusion. You get an IV and the doc just injects the aymital into the iv. painless if you can stand iv's and it takes the pain away. Then the doctor rubes this cream into your leg and them manipulates your legs. The manipulation is to overstimulate the nerve. The only problem with me is that my body is strong when it comes to medications, and it builds up a tolerance VERY FAST!!!!! But I do suggest that proceedure to anyone. A little while ago I had to have a surgury to have a portacath put in because the nurses couldn't find any veins anymore. The surgury made my RSD spread to my left arm. Luckily I had a block done in my neck and it went into remission!!! Through everything that has happened to me, I have found something good, something to take the pain away. And that's screenwriting. It takes my mind away from the pain, and the pain actually seems to go away for awhile. I really think that everone needs to find a hobby. Even if it isn't a normal hobby. Just something you love to do that takes you mind away from the pain. Right now I'm going to be talking to the docs about the SCS. I don't think I want it, especially because of what happened to my arm. I really don't want it to go in my back. But if it can lighten the pain and the load of the pills...maybe. Right now I'm on Topomax 8 pills a day, Oxycotin(time release)4 pills a day, Amtriptyline 50mg, and then normal Oxycodon for when the pain gets really bad. Oh yeah heres something else to tell you guys that the Specialist of BC told me. He said that some people don't get pain, swelling, discoloration,or many of the symptoms but they will have maybe two that are really prominate. Like for instance me. I only have the pain and my leg goes blue and purple sometimes. He said they will have those for the rest of their lives, unless it goes in remission of course. Now I think he only deals with RSD paitients, I can't remember. But what I'm trying to say is, to the lady whose husband who don't think this is RSD, he needs to trust the people from this site. From what I read from that small little bit, it really sounded like you had RSD. Just a different kind. He probably had one of those webpages that said you don't have RSD if you don't have ALL of these. Come on! We know not to listen to every website we ready and every line we ready or else it would lead to false hope. Well I have to leave now. I'll check up later. If you would like to discuss what I mean further I will. Today isn't a great day because I had an Infusion and so my heads not intirely great. It just makes things a little fuzzy. I'll explain later.
ByeBye





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