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 06-20-2012, 10:45 AM #15
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Vrae Vrae is offline
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Location: Denver
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Vrae Vrae is offline
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Join Date: Apr 2011
Location: Denver
Posts: 703
10 yr Member
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@ JimKing, Thank you for your response. It was good to hear from your prospective. You sound much like my husband, and no... your not being self-centered at all. The rant is justified.

I too am nearing my 10 year battle trying to slay this dragon. and you’re right, our healthcare system, or lack thereof, is terribly flawed to say the least. Western medicine has little to offer me, in my opinion. I completely understand the position your wife has taken. I question EVERYTHING, and that seems to boggle their minds. You do begin to feel as though they are the enemy because they know so little about what is happening to us, and seem to have so little compassion. It starts to feel as though everything is a fight. Fighting to deal with the pain and disabilities that come with RSD, fighting to educate the “educated” as to why a ton of surgeries and procedures are not a good idea, and fighting to get the pain management that IS important/necessary... and that just because we have a prescription street drug problem in this country, shouldn’t hinder those of us who require these meds to find relief. And don’t even get me started on Ins, or Medicaid, Medicare, SSI, SSDI, etc.... It’s all a freak’n mess. We even have to fight just to see a doctor that we will have to convince and educate on our condition.

I do all kinds of research on this disease. It’s the only way to find out what the top nuero docs are doing to try and understand how to fix us. Most of the time I feel as though I am some kind of threat to most of these docs i am forced to see, because I know too much. I don’t just nod and smile and say OKAY to everything they what to try, and with good reason. At this point, I am the best physician I have, and i know my body better than anyone.

There are a couple of docs that I have found, specifically one out in CA that seem to get it. On the cutting edge of research & treatments. I wish I could afford their expertise. The relief that they might be able to offer is out of my reach as it is only for the rich.
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"Thanks for this!" says:
eva5667faliure (10-15-2012)
 

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