Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-12-2011, 03:01 PM #1
katric511 katric511 is offline
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My brother is 25 yrs old, he has been in and out of the hospital since he was 19yrs old when he decided to join the army. He was stationed in Seattle, when he got a virus called Guillain-Barre syndrome, after that went away he developed Complex Regional Pain Syndrome on his right leg. He has been prescribed so many different medications to control the pain but none are helping. They have given him tranquilizers to knock him out for some surgeries and those don't help..Its to the point where the doctors are starting to worry because the pain is getting out of control and they are not sure what to do. They know that it is possible that all the meds could affect his insides..He went back to the hospital three days ago, he started throwing up everyday and he barely has an appetite. I'm not sure if its the medication that has also changed his personality. He's not depressed or anything like that but he has changed to where he is acting like a child calling "mommy" and laying with mommy and asking for toys for his birthday and for Christmas. I don't know what will happen, we are all scared and my mom has been stressed out, to where she's getting sick ulcers, kidney stones. I don't want to think about the possibility of losing another brother..
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Old 02-14-2011, 12:25 AM #2
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So sorry your family is going through this. His meds could be causing him to do really strange things. When I was on Lyrica I hallucinated and would say and do the bizzare things. It is really hard to find the right "cocktail" and until they find the perfect combo, then you may see strange behavior with him. I would advise that someone writes downs everything he does on his meds AND someone needs to go to the doc appts. with him. You have come to the right place to get advice and friendship. Everyone here is wonderful and understanding, no matter what!!
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Old 02-14-2011, 07:23 PM #3
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Dear katric -

Very sorry to hear of your brother's situation. The best I can think of is to make sure he's getting the most competant care from a real CRPS specialist.

Can you tell us - in as general or specific terms as you are comfortable - where your family lives? That way, we can hopefully offer the names of doctors in your general area with whom we have learned to place our trust: and you can tell us whether he's already seen them. Thanks.

Mike
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Old 02-14-2011, 11:22 PM #4
kathy d kathy d is offline
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Dear Katric,
Wow, sorry to hear about your brother. Scary. I don't like how his personality changed so much. I would take a look at his meds to see what he is taking. Maybe there is a combination of some things that is making him so changed. I have rubbed a compound of Klonodine on my foot and had hallucinations from it and had to stop. I kept seeing a scary devil face with horns. Freaked me out. Make sure he is seeing a neurologist too. It could be something neurological going on. He is so young. Your poor mom (and the rest of the family/friends) need to calm down because if he sees them a mess he will feel those vibes and it will make him worse. Stress causes rsd to get worse. Let us know how he is doing. Best of luck to you. I will keep him in my prayers.
kathy d
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Old 02-15-2011, 08:56 PM #5
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I'm with you on the meds, doc. gave me gabpentin I was praying for the first & only pill to wear off. I would never take another & have had 2 other docs to get me back on it.I did not get out of bed for 24 hrs I was scared as to what might happen to me. Just a thought.
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