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 01-12-2010, 07:58 PM #1
momzpeachy momzpeachy is offline
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Join Date: Feb 2007
Location: NE PA
Posts: 150
15 yr Member
momzpeachy momzpeachy is offline
Member
 
Join Date: Feb 2007
Location: NE PA
Posts: 150
15 yr Member
Default Doing Horrible After Ketamine - Now What??

Hi everyone

I'm sorry it has been so long since I posted. I have not been doing well and every day is a struggle to get out of bed and do pretty much anything.

I have been doing ketamine at Hahnemann in philly and I am seeing one of Schwartman's partners...not actually Dr. S. I completed the 10 day outpatient plus a couple of the boosters. I just had 2 boosters last week and now I have to wait 3 months for the next!!!!!!!!

I have no idea what really happened to me. I'm worse than I was before I started the whole ketamine process. The Doctor says I have "maximal RSD". It's entirely full body and affecting my internal organs as well. The RSD is in my eyes..my right eye really bad and also I now have trouble swallowing, chewing and talking. I look like a giant strawberry! I am RED all over and swollen. It's horrible. My face looks disgusting along with my entire upper body. At least I can cover the rest of me with clothing at the moment. I hate it! I absolutely hate it! I can't sleep! I sweat so bad..full body! I look like I just got out of a swimming pool. Then I get the chills and freak out. Throughout the day, I will just get so hot and start sweating and feel like passing out...then it stops. I get dizzy and everything. I also turn even more red! I am so embarrassed to be seen in public anymore. I hate being around people because I'm embarassed and feel horrible. I have now slumped into a hermit shell and don't want to come out. I change my sheets every day. I also have bladder and bowel issues now which is even more embarrassing. I have trouble walking and using my hands now. Every joint in my body is inflamed. I can't even pick up an empty cup. I have atrophy in my feet and now starting in my hands. WHY!!!!!!!!! I don't get it! The 10 day ketamine helped..I felt great during it. Now I hate life. I hate waking up every day and feeling this way. I don't know what happened with these boosters...they didn't work? Also, I did have issues with the IV. My husband had to pull over on the way home the first day to pull the IV out. It kinked in my arm and was bleeding and hurt so bad I really did almost pass out. I couldn't breathe! it was horrible! Then the next day, she blew 2 veins! What a mess!

They are telling me I can't come in sooner for ketamine because it's "out of protocol". I think it's BS! My Dr is still trying to get me in for the 5 day inpatient ketamine. I'm waiting to hear on that but that can take some time. In the meantime, now what???? My Dr has not returned my phone calls and I am miserable! I need help and don't know what to do.

Can anyone give some advice here as to where to go next? I'm afraid it won't be long before I'm completely bedridden.

This cold weather sure isn't helping either! I am really hating this winter!

Take care everyone...
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