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 10-16-2012, 06:37 PM #11
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Thank you for your responses. It is reassuring to hear I am not the only one, and am saddened at the same time to hear this as well. It is very frustrating. To address some of the questions/ideas.... I wish it were as easy as find another doctor. I have the "great" pleasure of having worker's comp so it isn't as cut and dry as that. I have been to a few now, but pretty much the same outcome. As far as having an advocate with me, I always have someone, rather it be a family memeber (usually my mom) or my fiance with me. I have the compound lotion with the Ketamine in it, and I swear by it. It really does help give that extra relief directly to my major problem areas. I also have a plethora of pictures on my phone with dates and times just to document the changes as things with my foot are sporadic and I cannot make it do certain things on a whim. I always work willingly as their guinea pig and do everything asked of me and then some. So, I guess it is too much to ask for some respect in return.

Sorry about the rant. Lol Built up frustrations just come flying out of me sometimes.
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Old 10-17-2012, 09:43 AM #12
betsykk betsykk is offline
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My daughter gets amazing pain relief from ketamine infusions. We just got back from Carolina Pain Institute in Winston Salem. Dr North is very knowledgable about RSD and very pro ketamine. There is a hospitality house affliated with the local hospitals if you opt for the infusions.

His infusions combined with blocks have given my daughter total relief.
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Old 10-21-2012, 07:56 PM #13
denise2 denise2 is offline
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Quote:
Originally Posted by Babygirl3234 View Post
Hi everyone! I am new to this forum and have a general question for those of you who are in your 20's or younger with CRPS, or are associated with someone that fits this description.

I was diagnosed two years ago at the age of 25. Still trying to work everyday, though saying it is a struggle is an understatement. I have had sympathetic blocks which didn't work and am currently awaiting my neuro stim trial. My CRPS was poorly treated from the beginning and just recently started getting the treatments I needed a year and a half ago.

So, my question is this, when going to a new doctor, do you find it hard to be taken seriously because of your age? I recently had to go to a new doctor and this isn't the first time this has happened, but they treat me like a common street criminal looking for drugs. Aside from aquatic therapy, and the pain treatments, I am also on opiates. Have tried several different "nerve meds", but they all make me very sick. All I get is lectures about how I am too young to be on these meds. Like I enjoy it? The problem is, they all want toagnosed lecture, but give no alternatives. It is frustrating to be treated this way. My family feels this same frustration as well watching me go through it.

Just wondering if I am alone in this battle? Maybe it isn't even my age, maybe it is a common thing to be treated this way because of the lack of understanding of this disease? Thoughts? Experiences?
I just turned 20 a couple months ago and was recently diagnosed. I go see a pain doc and the pain pills he gives dont work and i tell him ever time and he wont change them. He tells me all the times that i am too young and dont need to b on pill that i just need to go to theaphy. Age really does matter.
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